July is Sarcoma Awareness Month – Raise Awareness for this “Forgotten Cancer”

If you see yellow ribbons around your community during the month of July, it may mean something different than the usual “Support Our Troops” many think of when first sighted. Instead, they could be displayed in honor of Sarcoma Awareness Month, observed each July.

Sarcoma is a soft-tissue cancer that may occur in a variety of the body’s soft tissues, including the nerves, muscles, joints, blood vessels, fat and more. Sarcoma may also occur in the bones.  Although rare in adults, making up just ONE percent of adult cancers, sarcoma is relatively common in children, accounting for fifteen percent of childhood cancer cases.  Bone and joint cancer is most frequently diagnosed among teenagers, while soft tissue cancers typically affect those 55 years or older.

Sarcoma is most often found in the arms and legs, where the majority of connective tissues are located, but it can occur virtually anywhere. Because the disease often starts deep in the body, it may not be noticeable until a large lump or bump appears — and at this point the cancer may be difficult to treat.

The Sarcoma Foundation of America (SFA) estimates that about 20 percent of sarcoma cases are curable by surgery while another 30 percent may be effectively treated with surgery, chemotherapy and/or radiation. However, in about half of cases, the disease is resistant to all form of treatments, highlighting an urgent need for new therapies.

Soft tissue sarcomas form in cartilage, fat, muscle, blood vessels, tendons, nerves, and around joints. Osteosarcomas develop in bone; liposarcomas form in fat; rhabdomyosarcomas form in muscle; and Ewing sarcomas form in bone and soft tissue.

In 2018, over 13,000 cases of soft tissue sarcoma and 3,400 cases of bone sarcomas are expected to be diagnosed in the United States, according to data from the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program (SEER). Approximately 5,100 and 1,590 people are expected to die from soft tissue and bone sarcomas, respectively. The five-year survival rate for soft tissue sarcomas is 50 percent, while the survival rate is 66 percent for bone sarcomas.

Because sarcomas are difficult to distinguish from other cancers when they are found within organs, their incidence is probably underestimated, according to the National Cancer Institute.

 Fast facts on sarcoma

  • There are over 50 types of soft tissue sarcoma.
  • Symptoms may not be apparent; often, the only sign of sarcoma is a lump.
  • Pain may occur depending on where the tumor is located, or if it presses on nearby nerves.
  • Treatment, as for other forms of cancer, can include surgery, radiation therapy, and chemotherapy.

Symptoms of soft tissue sarcoma

People with soft tissue sarcomas often have no symptoms. There may be no signs until the lump grows to a large size and can be felt; however, even this may go unnoticed. The main symptoms are:

  • Pain – the most obvious symptom. Once the tumor affects local tissues, nerves, or muscles, it can be felt as pain in the general area.
  • Inflammation – the tumor grows and eventually affects the area with inflammation and swelling.
  • Location specific symptoms – inability to move limbs properly (if the sarcoma is on the arms or legs for example) and other impairments depending on the location.

Specific symptoms may reflect the particular type of sarcoma. For instance, tumors in the gastrointestinal system may bleed, so these sarcomas might produce symptoms like blood in the stool, or a stool that has a black, tarry appearance.

Types of sarcoma

Types of soft tissue sarcoma are defined by the specific tissue or location affected; they include:

  • Undifferentiated pleomorphic sarcoma – previously known as malignant fibrous histiocytoma – this tumor is most often found in the arms or legs but sometimes at the back of the abdomen.
  • Gastrointestinal stromal tumor (GIST) – this affects specialized neuromuscular cells of the gut.
  • Liposarcoma – sarcoma of fat tissue.
  • Leiomyosarcoma – affects smooth muscle in organ walls.
  • Synovial sarcomas – these are usually found around a joint in the arms or legs.
  • Malignant peripheral nerve sheath tumor – also known as neurofibrosarcoma, it affects the protective lining of the nerves.
  • Rhabdomyosarcoma – this forms in muscle and is a childhood cancer. While rare overall, it is a relatively common tumor in children.
  • Angiosarcomas – these develop in the cells of the blood or lymph vessels.
  • Fibrosarcomas – sarcomas that usually form in the limbs or on the trunk, forming from fibroblasts, the most common cell type in connective tissue.
  • Kaposi’s sarcoma – a sarcoma that affects the skin and is caused by a virus. The most common form of Kaposi’s sarcoma is related to AIDS.  Kaposi’s tumors often produce distinctive skin lesions but also affect other soft tissues.  Kaposi’s sarcoma is caused by the human herpesvirus 8.
  • Further examples – these include dermatofibrosarcoma protuberans, a skin lesion; epithelioid sarcoma, which often affects young adults’ hands or feet; myxoma, which affects older adults, usually in the arms and legs; mesenchymomas, which are rare and combine elements of other sarcomas and can be found in any part of the body; vascular sarcomas, containing many blood vessels; and malignant neurilemmoma (also known as schwannoma).  Sarcoma of the bone includes osteosarcoma, Ewing sarcoma, and chondrosarcoma.

Causes of sarcoma

The causes behind sarcoma are unknown, but there are some known risk factors. In adults, for instance, exposure to phenoxy acetic acid in herbicides or chlorophenols in wood preservatives may increase the risk. High doses of radiation are also known to cause sarcomas in some people, as are certain rare genetic alterations. The following inherited diseases are also associated with an increase sarcoma risk, according to SFA:

  • Li-Fraumeni syndrome, which is associated with alterations in the p53 gene
  • Von Recklinghausen’s disease (neurofibromatosis), which is associated with alterations in the NF1 gene

Having certain inherited disorders can increase the risk for other soft tissue sarcomas, including retinoblastoma, tuberous sclerosis, Werner syndrome, and nevoid basal cell carcinoma syndrome. Other risk factors for soft tissue sarcoma include past treatment with radiation therapy for certain cancers; exposure to certain chemicals, such as thorium dioxide, vinyl chloride, or arsenic; and long-term lymphedema in the arms or legs.

Past treatment with radiation can increase the risk of osteosarcoma and other types of bone cancers. Other risk factors for osteosarcoma include treatment with anticancer drugs called alkylating agents, having a certain change in the retinoblastoma gene, and having certain conditions including Paget disease, Diamond-Blackfan anemia, and Werner syndrome.

Tests and diagnosis of sarcoma

After understanding a patient’s medical history and completing a medical examination, medical imaging scans will help to inform a diagnosis, which will need to be confirmed through laboratory analysis of a tumor sample.

The following physical features should prompt a doctor to investigate:

  1. larger than 2 inches in diameter or growing in size
  2. fixed, immovable, or deep
  3. painful
  4. return of tumor previously removed

Medical imaging helps to locate, characterize, and give further information about a tumor to guide diagnosis. It may also be used to gauge the success of treatment or to look for spread of cancer.

Imaging techniques include X-rays, CT scan (computed tomography), MRI(magnetic resonance imaging), ultrasound, and PET (positron emission tomography).

Treatments for soft tissue sarcoma

The following treatment options can be used for sarcomas:

  • Surgery – the most common sarcoma treatment. It aims to remove the tumor and even some of the normal surrounding tissue. A biopsy sample is often taken at the same time to confirm the exact type of tumor.
  • Radiation therapy – this destroys cancer cells and may be done in addition to surgery, before or after the operation.
  • Chemotherapy – this could also be used in addition to surgery, though less often than radiation therapy.

Some soft tissue sarcomas have other available treatments, such as specific drug treatments, gene-targeted therapies, or biological therapies such as immunotherapy.

Treatment choice and intensity are also guided by the stage and grade of cancer, by the size of the tumor, and extent of any spread.

Prevention of sarcoma

Sarcoma is not typically preventable. Radiation therapy is a risk factor, so reducing exposure to it may be preventive, although a need for radiation therapy usually outweighs any subsequent sarcoma risk.

Observing Sarcoma Awareness Month

Sarcoma is still considered to be the “forgotten cancer.”  Efforts to encourage research and drug development are made more challenging due to a lack of awareness and understanding.  How as a community do we raise funds for vital research if people don’t know that this cancer exists?

Though the Sarcoma Foundation of America works tirelessly every day to raise awareness, during Sarcoma Awareness Month, they aim to further highlight the extraordinary challenges sarcoma patients face and the need for more sarcoma research and better sarcoma therapies.  Please join in efforts and pledge to bring awareness to your community.  Here are a few ways you can help highlight the need for ongoing research on sarcoma:

  • This July, take a moment to share a message via social media or speak with your friends and family about this relatively unknown condition.
  • Join sarcoma patients, survivors and their loved ones for the Steps to Cure Sarcoma.  Every dollar raised will be used to fund research, patient advocacy and education.
  • Take a moment to listen to a Sarcoma Awareness Month Public Service Announcement campaign. Share it online to raise awareness.
  • Get together with others in the sarcoma community and donate today!

Getting Help

Since sarcoma is a rare cancer, many people are unfamiliar with the disease and have not been affected personally. However, many children’s lives have been altered because of this disease, and advances in early detection and treatment could help save lives.

A number of clinical trails are underway for people with sarcoma. If you’ve been recently diagnosed, ask your doctor if a clinical trial, which could give you access to novel treatment options, is right for you.

Trying to find the right doctor to determine if that lump or new pain is something more than just a little annoying is made easy at HealthLynked.  We are the first ever social ecosystem designed to connect physicians and patients in a truly collaborative platform to Improve HealthCare.

Ready to get Lynked?  Sign up for free today and take control of your wellness!

 

Sources:

Han, MD, Seunggu.  “Sarcoma: Symptoms, types, treatments, and causes.” Medical News Today.  23 May 2017.

https://www.curesarcoma.org/sarcoma-awareness-month/

https://www.aacrfoundation.org/Pages/sarcoma_awareness_month.aspx

https://www.gatewaycr.org/gateway-blog/posts/2017/july/july-is-sarcoma-awareness-month-what-is-sarcoma/

 

 

 

How is Excess Body Fat Priming Our Brains for Mental Decline?

As today marks the 81st birthday of Krispy Kreme – an American doughnut company and coffeehouse chain based in Winston-Salem, North Carolina built off an ancient, secret cajun recipe – it seems a fitting day to talk about obesity, fat, and its effect on the brain.  Let’s start with “skinny fat”.

Sarcopenia, which is the loss of muscle mass, tends to happen naturally with age. So, in older people with sarcopenia, excess body fat may not be readily visible. But hidden fat, paired with muscle mass loss later in life, could predict Alzheimer’s risk, researchers warn, and Sarcopenic obesity may exacerbate the risk of other cognitive decline later in life.

A recent study — the results of which have been published in the journal Clinical Interventions in Aging — has found that sarcopenia and obesity (independently, but especially when occurring together) can heighten the risk of cognitive function impairments later in life.

The research was conducted by scientists at the Comprehensive Center for Brain Health at the Charles E. Schmidt College of Medicine of Florida Atlantic University in Boca Raton.

“Sarcopenia,” explains senior study author Dr. James Galvin, “has been linked to global cognitive impairment and dysfunction in specific cognitive skills including memory, speed, and executive functions.”

“Understanding the mechanisms through which this syndrome may affect cognition is important as it may inform efforts to prevent cognitive decline in later life by targeting at-risk groups with an imbalance between lean and fat mass.”

Dr. James Galvin

“They may benefit from programs addressing loss of cognitive function by maintaining and improving strength and preventing obesity,” he adds.

Beware sarcopenic obesity

The scientists analyzed health-related data collected from 353 participants — aged 69, on average — all of whom registered to take part in community-based studies on aging and memory.

To establish whether or not there was a link between sarcopenic obesity — that is, the presence of excess body fat in conjunction with muscle mass loss — and cognitive decline, the team assessed participants’ performance on tests evaluating cognitive function, including the Montreal Cognitive Assessment and animal-naming exercises.

Also, the participants’ muscle strength and mass were evaluated through grip strength tests and chair stands, and they also underwent body compositions assessments, which looked at muscle mass, body mass index (BMI), and the amount of body fat.

The researchers discovered that the participants with sarcopenic obesity had the poorest performance on cognition-related tests.  The next poorest performance on cognition tests was seen in people with sarcopenia alone, followed by participants who only had obesity.

Both when occurring independently and when occurring in concert, obesity and loss of muscle mass were linked with impaired working memory — which is the type of memory we use when making spontaneous decisions on a daily basis — as well as less mental flexibility, poorer orientation, and worse self-control.

Keep changes in body composition in check

The scientists explain that obesity could exacerbate the risk of cognitive decline through biological mechanisms that influence vascular health, metabolism, and inflammation.

Moreover, they warn that in people who already face impaired executive functioning, obesity might also impact energy resources through poor self-control that affects nutrition.

As for sarcopenia, the researchers note that it could influence brain mechanisms related to conflict resolution skills and selective attention.

Based on the study’s findings, Dr. Galvin and his colleagues are particularly concerned that a mix of sarcopenia and excess body fat in older adults could become a serious public health issue, so they believe that any significant changes in body mass composition should be closely monitored to prevent negative health outcomes.

“Sarcopenia either alone or in the presence of obesity, can be used in clinical practice to estimate potential risk of cognitive impairment,” notes study co-author Magdalena Tolea.

But such health issues can be kept under control, and the risks associated with them averted, she suggests.

“Testing grip strength by dynamometry can be easily administered within the time constraints of a clinic visit, and body mass index is usually collected as part of annual wellness visits,” concludes Tolea.

How Aging and Obesity Prime the Brain for Alzheimer’s

According to another new study, the effects of natural aging processes, combined with those of obesity and a poor diet, affect certain brain mechanisms, thereby boosting the risk of Alzheimer’s. The new study, conducted on mice, uncovered how a high-fat, high-sugar diet renders the aging brain more vulnerable to Alzheimer’s.

Alzheimer’s disease is a neurodegenerative condition that is characterized primarily by memory loss and impaired cognition.  Some risk factors for the development of this disease are aging and metabolic conditions such as obesity and diabetes.  However, many of the biological mechanisms underlying the onset and progression of this disease remain unknown.

This is despite the fact that our understanding of the predisposing risk factors is growing all the time.  Now, Rebecca MacPherson, Bradley Baranowski, and Kirsten Bott — of Brock University in Ontario, Canada — have conducted a study that has allowed them to uncover some more of the mechanics at play in the development of this type of dementia.

The team worked with aging mice to investigate how a high-fat, high-sugar (HFS) diet that fueled obesity might also prime the brain for neurodegeneration in this sample.  Their findings are described in a paper now published in the journal Physiological Reports.

How unhealthful diets impact the brain

Specifically, the researchers examined how an HFS diet, in conjunction with the effects of normal biological aging, would affect insulin signaling, which helps to regulate the amount of glucose (simple sugar) absorbed by muscles and different organs.

They also looked at how this obesity-inducing diet might alter biomarkers relating to inflammation and cellular stress.

To understand the impact of an HFS diet on aging mice, the research team put some mice on a regular type diet, while others were given food that had a high fat and sugar content.

After the mice had been fed their respective diets for a period of 13 weeks, the team looked for signs of inflammation and measured cellular stress levels in two brain areas associated with memory and cognitive behavior: the hippocampus and the prefrontal cortex.

The researchers also compared the effects of an HFS diet on the brains of aging rodents’ baseline measurements effected on the brains of younger mice.

They found older mice on an obesity-inducing diet had high levels of brain inflammation and cellular stress, as well as insulin resistance in parts of the hippocampus linked to the development of Alzheimer’s disease.

Although more markers of insulin resistance were observed in the prefrontal cortices of mice that had been on an HFS diet, inflammation status and cellular stress markers remained the same.

The study authors hypothesize that “region-specific differences between the prefrontal cortex and hippocampus in response to aging with an HFS diet [suggest] that the disease pathology is not uniform throughout the brain.”

Obesity boosts aging’s negative effect

Notably, the researchers also found that brain inflammation levels had also increased in the mice that had been on a regular diet, compared with baseline measurements.

The researchers note that this could be taken as evidence of aging’s role as an independent risk factor in Alzheimer’s. Obesity, they add, boosts the risk by affecting key mechanisms in the brain.

“This study,” they claim, “provides novel information in relation to the mechanistic link between obesity and the transition from adulthood to middle age and signaling cascades that may be related to [Alzheimer’s] pathology later in life.”

“These results add to our basic understanding of the pathways involved in the early progression of [Alzheimer’s] pathogenesis and demonstrate the negative effects of an HFS diet on both the prefrontal cortex and hippocampal regions.”

Every day, there are physicians in the HealthLynked system ready to help those combating obesity and care for Alzheimer and dementia patients  to help them live the best lives possible.  If someone you love is showing signs of memory loss beyond what might be considered normal for their age, or if too many donuts have made their way into your system, go to HealthLynked.com to connect and collaborate with any number of specialists at the ready.

 

Ready to get Lynked and get help?  Go to HealthLynked.com today to register for free!

 

Adapted from:

Cohut, Maria. ”Skinny fat’ linked to cognitive decline, study warns.” Medical News Today, Friday 6 July 2018

Cohut, Maria. ”Aging, obesity may prime the brain for Alzheimer’s.” Medical News Today, Monday 2 July 2018

 

  Disruptive Technology Turns 11; Creator Set to Break Through $1T

It  was the worst kept tech secret of all time; and though everyone knew it was coming,  no one predicted how the iPhone would change the world.  11 years after its launch, Apple is now poised to become the first ever $1T company.

While people published rumors and others guessed at design, buyers began to camp outside stores days in advance to snag a $600 device they’d never seen. Before its release, the hype for an Apple-devised phone was off the scale. It even garnered the nickname the “Jesus phone” — or “jPhone”.  Some felt it would be miraculous, while most believed it could in no way live up to the hype.

It wasn’t the first time in tech history a frenzy was create over a new device. The first whispers came in the summer of 1944: a Hungarian inventor living in Argentina had created something sensational. On the day of its release, New Yorkers “trampled on another” in 1945 to buy the first commercially available ballpoint pens, where they paid the equivalent of $175 in today’s money. That was for a pen, not an Ubersmart mobile device that connects you to the universe.

Despite drawing hordes of fans, the iPhone didn’t immediately charm its way into the mainstream because of its high price tag. Just two months after the iPhone’s initial release, Apple trimmed the handset’s price down to $400. That helped a little, but it wasn’t until 2008 — when Apple unveiled the iPhone 3G with a new $200 price tag and access to the faster 3G network — that the smartphone exploded in popularity. Apple sold over 10 million iPhone 3G units worldwide in just five months.

It wasn’t the faster network or the price tag that really set the iPhone ahead of its competitors. Apple’s core philosophy, then and now, is that software is the key ingredient; and the operating system lying beneath the iPhone’s sleek and sexy touchscreen broke new ground. Unlike other cellphones’ software, the iPhone’s operating system was controlled by Apple rather than a mobile carrier.

Just as the Apple II in 1977 was the first computer made for consumers, the iPhone was the first phone whose software was designed with the user in mind. It was the first phone to make listening to music, checking voicemail and browsing the web as easy as swiping, pinching and tapping a screen — pleasant like a massage.

“An iPod, a phone, an internet mobile communicator,” Jobs said when preparing to introduce the iPhone in 2007. “An iPod, a phone, an internet mobile communicator…. These are not three separate devices!”  Apple put a miniature computer in consumers’ pockets.

But that wasn’t enough for iPhone users. Operating on a closed platform, the iPhone was limited to the few apps that Apple offered — and the handset was restricted to one U.S. carrier — AT&T. The iPhone’s software limitations gave birth to an underground world of hackers seeking to add third-party applications, known as the Jailbreak community. And the AT&T exclusivity created a subset of that hacker community focusing on unlocking the iPhone to work with various carriers — today famously known as the iPhone Dev-Team.

Apple did benefit tremendously from iPhone hackers. The company learned from the Jailbreak community that third-party applications were in high demand and would add even more appeal to the phone. This revelation led to Apple opening its iPhone App Store, which launched concurrently with the second-generation iPhone, iPhone 3G.

Fast forward.  The iPhone turned out to be a game-changer – the proverbial paradigm shift wrapped in a sleek black case housing powerful innovative technology.  It has gone on to Impact the lives of hundreds of millions of people around the world, changing the way we communicate, work, learn and play.

77.3 Million iPhones were sold in the fourth quarter of 2017.  Assuming that each boxed iPhone weighs approximately 500g, give or take, that’s around 39,000 metric tons of iPhones, which is the equivalent of 630  Abrams M1A2 battle tanks.  The Sales volume works out to almost ten iPhones a second, and they sold for an average of $796.  This is how Apple will likely crest $1T this year.

Just like that, Apple flipped cellphone business on its head and transformed mobile software into a viable product. But the most surprising thing about the iPhone is the impact it’s had on six major industries.

The PC Industry –  Apple’s stroke of genius was to put one in your pocket. Until the iPhone shipped, PC sales were around 400 million a year.  As the iPhone and smartphones in general have become critical tools for information, used for productivity, communications and pleasure, the PC has become less important to many people. Until the mobile revolution that came with the iPhone, the only way people could access the Internet was from a PC or laptop.

Today, thanks to the iPhone, iPad and all the Android equivalents inspired by Apple’s ideas, people have many more options to make the connections they need regardless of location. Consequently, the PC industry is now shipping only about 275 to 290 million PCs a year, and this has caused a level of industry consolidation that is now concentrated around Lenovo, HP, Dell, Acer and Apple.

Telecom – Before the iPhone, most of the original telco business models were around voice. Voice over IP became popular by 2000 and had already started pushing the telecom companies to move to digital voice instead of traditional landline voice delivery methods. But with the advent of the iPhone, they were effectively forced out of the traditional voice business altogether.  While there were millions of payphones in place a decade ago, Try and locate a payphone today.

Now, telecom providers are data communications companies whose business models have been completely transformed. All have added things like information and entertainment services, and all have become conduits for multiple types of data services to their customers.

Movie and TV – In order to watch a movie, you once  had to go to a movie theater; and to watch a TV show, you had to sit in front of my television at home and scan three channels….plus PBS.  The iPhone created a mobile platform for video delivery, and since 2007, every major movie and TV studio has been forced to expand their distribution methods to include downloaded and streaming services to mobile devices.

We can thank the millions of iPhones in the field, capable of letting people watch video anytime and anywhere, for prodding these studios to make this so. We can also thank the iPhone for fueling new types of video services like YouTube, Netflix and Hulu — video powerhouses, at least 50% of whose content is viewed on some type of mobile device.

Software distribution.  With the launch of the App Store, Apple shook up the mobile industry again by reinventing software distribution. Apple designed the App Store’s model with a do-it-yourself mentality: All software developers had to do was code an interesting app, submit it to the App Store for approval and market the app however they wished.

The App Store’s method is proving far more effective than the old-fashioned computer shareware model, where developers would offer a free trial of their apps and then cross their fingers that consumers would eventually pay. The shareware model especially didn’t help independent coders, whose apps got trampled on by large software companies with fatter marketing budgets.

Video Gaming.  Before 2007, most games were either delivered by way of game consoles, a PC or a dedicated handheld device like the Nintendo DS or Sony PlayStation Portable. The iPhone expanded the market for mobile games as well as created an entirely new category of touch-based gameplay, persuading even holdouts like Nintendo to come aboard with games based on its iconic franchises.

And though the mobile dominant free-to-play model fractionalizes revenue, the potential for brand exposure is unprecedented: Niantic’s augmented reality-angled Pokémon Go alone has been downloaded over 750 million times. Contrast with Nintendo’s entire Mario franchise’s lifetime sales of just over 500 million.

HealthCare. Today, one can use an iPhone to monitor various health metrics as well as access detailed health information, connecting with health professionals and even receiving health advice virtually anytime and anywhere across a number of different applications.  And we’ve only begun to see how smartphones can impact the health industry – an impact that will doubtless expand as this industry embraces the smartphone for outpatient care.

And HealthLynked will be a huge part of this.  We are not unlike the iPhone.  Where multiple apps do one thing, we are combining all that makes mobile health great into one easy to use, secure platform.  It’s sort of a Swiss Army knife, meets iPhone meets medicine, wrapped in the sleek, easy to use interface of a social platform.  You can find it in the Apple Store.

Ready to start taking control of your health in ways never thought possible?  Get Lynked!  Go to HealtheLynked.com to sign up For Free!



Sources:  Blending the two fantastic articles below.

JUNE 29, 2007: IPHONE, YOU PHONE, WE ALL WANNA IPHONE, by  Brian X. Chen.  Brian wrote a book about the always-connected mobile future called Always On (published June 7, 2011 by Da Capo). Check out Brian’s Google Profile.

 

How Apple’s iPhone Changed These 5 Major Industries, By TIM BAJARIN June 26, 2017.  Tim is recognized as one of the leading industry consultants, analysts and futurists, covering the field of personal computers and consumer technology. Mr. Bajarin is the President of Creative Strategies, Inc and has been with the company since 1981 where he has served as a consultant providing analysis to most of the leading hardware and software vendors in the industry.

 

Photo: Young Steve Jobs
Credit: Ben Lovejoy in Tim Cook Tweets, 9to5Mac

 

Title:  Disruptive Technology Turns 11; Creator Set to Break Through $1T

 

#apple,#iPhone,#healthcareIT,#healthcarereform,#healthcareITreform

 

 

Link between 2 key Alzheimer’s proteins explained | Targeting tau production may lead to treatment


by Tamara Bhandari•March 21, 2018

Alzheimer’s disease is characterized by clumps of two proteins – amyloid beta and tau – in the brain, but the link between the two has never been entirely clear. Now, researchers at Washington University School of Medicine in St. Louis have shown that people with more amyloid in the brain produce more tau, which could lead to new treatments for the disease based on targeting the production of tau.

It’s a paradox of Alzheimer’s disease: Plaques of the sticky protein amyloid beta are the most characteristic sign in the brain of the deadly neurodegenerative disease. However, many older people have such plaques in their brains but do not have dementia.

The memory loss and confusion of Alzheimer’s instead is associated with tangles of a different brain protein – known as tau – that show up years after the plaques first form. The link between amyloid and tau has never been entirely clear. But now, researchers at Washington University School of Medicine in St. Louis have shown that people with more amyloid in their brains also produce more tau.

The findings, available March 21 in the journal Neuron, could lead to new treatments for Alzheimer’s, based on targeting the production of tau.

“We think this discovery is going to lead to more specific therapies targeting the disease process,” said senior author Randall Bateman, MD, the Charles F. and Joanne Knight Distinguished Professor of Neurology.

Years ago, researchers noted that people with Alzheimer’s disease have high levels of tau in the cerebrospinal fluid, which surrounds their brain and spinal cord. Tau – in the tangled form or not – is normally kept inside cells, so the presence of the protein in extracellular fluid was surprising. As Alzheimer’s disease causes widespread death of brain cells, researchers presumed the excess tau on the outside of cells was a byproduct of dying neurons releasing their proteins as they broke apart and perished. But it was also possible that neurons make and release more tau during the disease.

In order to find the source of the surplus tau, Bateman and colleagues decided to measure how tau was produced and cleared from human brain cells.

Along with co-senior author Celeste Karch, PhD, an assistant professor of psychiatry, and co-first authors Chihiro Sato, PhD, an instructor in neurology, and Nicolas Barthélemy, PhD, a postdoctoral researcher, the researchers applied a technique known as Stable Isotope Labeling Kinetics (SILK). The technique tracks how fast proteins are synthesized, released and cleared, and can measure production and clearance in models of neurons in the lab and also directly in people in the human central nervous system.

Using SILK, the researchers found that tau proteins consistently appeared after a three-day delay in human neurons in a laboratory dish. The timing suggests that tau release is an active process, unrelated to dying neurons.

Further, by studying 24 people, some of whom exhibited amyloid plaques and mild Alzheimer’s symptoms, they found a direct correlation between the amount of amyloid in a person’s brain and the amount of tau produced in the brain.

“Whether a person has symptoms of Alzheimer’s disease or not, if there are amyloid plaques, there is increased production of this soluble tau,” Bateman said.

The findings are a step toward understanding how the two key proteins in Alzheimer’s disease – amyloid and tau – interact with each other.

“We knew that people who had plaques typically had elevated levels of soluble tau,” Bateman said. “What we didn’t know was why. This explains the why: The presence of amyloid increases the production of tau.”

Tau is strongly linked to brain damage, so overproduction of the protein could be a critical step in the development of Alzheimer’s, and reducing tau’s production may help treat the disease, the researchers said.

“These findings point to an important new therapeutic avenue,” Karch said. “Blocking tau production could be considered as a target for treatment for the disease.”

Sato C, Barthélemy NR, Mawuenyega KG, Patterson BW, Gordon BA, Jockel-Balsarotti J, Sullivan M, Crisp MJ, Kasten T, Kirmess KM, Kanaan NM, Yarasheski KE, Baker-Nigh A, Benzinger TLS, Miller TM, Karch CM and Bateman RJ. Tau Kinetics in Neurons and the Human Central Nervous System. Neuron. March 21, 2018.

This work was supported by the National Institutes of Health (NIH), grant number R01NS095773, R01NS078398, K01 AG046374, K01 AG053474, P30DK056341, P01AG003991, UL1TR000448, P30NS098577, P50AG005681, and P01AG026276; Brightfocus Foundation, grant number A2014384S; the National Institute of Neurological Disorders and Stroke, grant numbers P01NS080675 and P30NS098577; Tau SILK Consortium (AbbVie, Biogen, and Eli Lily); Metlife Foundation; ALS Association; DIAN-TU; Hope Center for Neurological Disorders; The Foundation for Barnes-Jewish Hospital; Kanae Foundation for the Promotion of Science; McDonnell Science Grant for Neuroscience; the Tau Consortium; the Knight Alzheimer’s Disease Research Center; Coins for Alzheimer’s Research Trust; Alzheimer’s Association; and resources provided by Washington University Biomedical Mass Spectrometry Research Facility (NIH P41GM103422), Diabetes Research Center (NIH P30DK020579), and the Nutrition Obesity Research Center (NIH P30DK056341).

Washington University School of Medicine‘s 2,100 employed and volunteer faculty physicians also are the medical staff of Barnes-Jewish and St. Louis Children’s hospitals. The School of Medicine is one of the leading medical research, teaching and patient-care institutions in the nation, currently ranked seventh in the nation by U.S. News & World Report. Through its affiliations with Barnes-Jewish and St. Louis Children’s hospitals, the School of Medicine is linked to BJC HealthCare.

MEDIA CONTACT
Judy Martin Finch, Director of Media Relations

314-286-0105
martinju@wustl.edu
WRITER
Tamara Bhandari, Senior Medical Sciences Writer

Tamara Bhandari covers pathology, immunology, medical microbiology, cell biology, neurology, and radiology. She holds a bachelor’s degree in molecular biophysics and biochemistry and in sociology from Yale University, a master’s in public health/infectious diseases from the University of California, Berkeley, and a PhD in infectious disease immunology from the University of California, San Diego.

314-286-0122
tbhandari@wustl.edu


In honor of ALzheimers and Brain Awareness Month, this has been reproduced with permission.

The Often Misunderstood Diagnosis of Post Traumatic Stress Disorder

PTSD stands for Post-Traumatic Stress Disorder and is a condition that many veterans and non-veterans alike suffer; PTSD can occur when someone experiences or witnesses a traumatic event. This condition wasn’t always understood properly by the medical or military community, and Department of Defense press releases often point to earlier attempts to identify PTSD symptoms in the wake of service in World War 2, Vietnam, and other conflicts.

PTSD Awareness Day is observed today, Wednesday, June 27, 2018.

The History of PTSD Awareness Day

In 2010, Senator Kent Conrad pushed to get official recognition of PTSD via a “day of awareness” in tribute to a North Dakota National Guard member who took his life following two tours in Iraq.

Staff Sergeant Joe Biel died in 2007 after suffering from PTSD; Biel committed suicide after his return from duty to his home state. SSgt. Biel’s birthday, June 27, was selected as the official PTSD Awareness Day, now observed every year.

How Do People Observe Post-Traumatic Stress Disorder Awareness Day?

Much of what is done to observe PTSD Awareness Day involves encouraging open talk about PTSD, its’ causes, symptoms, and most important of all, getting help for the condition. When today, PTSD is often misunderstood by those lacking firsthand experience with the condition or those who suffer from it. PTSD Awareness Day is designed to help change that.

The Department of Defense publishes circulars, articles, and other materials to help educate and inform military members and their families about the condition. The Department of Veterans Affairs official site has several pages dedicated to PTSD, and when military members retiring or separating from the service fill out VA claim forms for service-connected injuries, illnesses, or disabilities, there is an option to be evaluated for PTSD as a part of the VA claims process.

What Is Post-Traumatic Stress Disorder?

The current American Psychiatric Association’s Diagnostic and Statistical Manual, DSM-IV, says PTSD can develop through a range of exposures to death or injury: direct personal involvement, witnessing it or, if it concerns someone close, just learning about it.  Post-traumatic stress disorder is a form of anxiety that can happen after experiencing or witnessing actual or near death, serious injury, war-related violence, terrorism or sexual violence.  While most people typically connect this disorder to military veterans or refugees, it can happen to anyone.

Almost no other psychiatric diagnosis has generated as much controversy.  The diagnosis is almost four decades old.  PTSD is not a sign of weakness, and people can be affected by PTSD even when they were not directly part of the traumatic event.

The specific nature of the trauma can and does vary greatly. Experts are quick to point out, while combat and combat-related military service can be incredibly challenging, and while witnessing or being a victim of an event that rips the fabric of daily life can be traumatic, not everyone responds the same way. Some may develop symptoms of PTSD, while others may be unaffected.

Post-Traumatic Stress Disorder: How Widespread Is It?

Some sources estimate that as many as 70% of all Americans have experienced a traumatic event sufficient to cause PTSD or PTSD-like symptoms. That does not mean that all 70% of Americans WILL suffer from PTSD. Using these statistics, some 224 million Americans have experienced a traumatic event. Of that number, some 20% will develop PTSD symptoms, roughly 44 million people.

Of that 44 million, an estimated eight percent experience active PTSD symptoms at any one time. An estimated 50% of all mental health patients are also diagnosed with Post-Traumatic Stress Disorder.

PTSD: Often Misunderstood and Misidentified

“Shell shock” and “combat shock” were earlier attempts to define and understand the symptoms of PTSD. Post-traumatic stress disorder was often stigmatized in popular culture after the Vietnam conflict, and many films and television shows featured antagonists or unsympathetic characters suffering from “Vietnam flashbacks” or other issues.

The misunderstanding of PTSD slowly began to change in 1980 when it was recognized as a specific condition with identifiable symptoms. It was then the disorder was listed in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM).

This manual is a diagnostic tool for mental health professionals and paraprofessional workers in the healthcare field and is considered a definitive reference. The addition of PTSD to the DSM was a highly significant development.

Today, the symptoms of Post Traumatic Stress Disorder are better understood, treatable, and recognized by the Department of Veterans Affairs as a service-connected condition. PTSD is not exclusive to veterans or currently serving members of the United States military, but a portion of those who serve are definitely at risk for PTSD.

What Are the Symptoms of Post-Traumatic Stress Syndrome?

Some PTSD symptoms may seem vague and non-specific, others are more readily identified specifically as evidence of PTSD. In this context “non-specific” means that the symptoms may be related to other mental health issues and not specifically limited to Post-Traumatic Stress Disorder.

In the same way, more “specific” symptoms may be manifest outside PTSD, but when looking for specific signifiers, these issues are common “red flags” that indicate PTSD may be the cause of the suffering rather than a different condition. This is often circumstantial, and there is no one-size-fits-all diagnosis for the condition.

Suicidal thoughts or self-destructive acts are often a result of PTSD or related symptoms. Anyone experiencing thoughts or urges to self-harm should seek immediate care to prevent the condition from getting worse in the short-term. (See below)

That said, more non-specific symptoms include varying degrees of irritability, depression, and suicidal feelings. More specific problems-especially where veterans and currently serving military members are concerned-include something known as “hypervigilance” or “hyperarousal”.

Other symptoms include repeatedly experiencing the traumatic event(s) in the form of flashbacks, nightmares, persistent memories of the event(s), and intrusive thoughts about the traumatic event(s).

These symptoms vary in intensity depending on the individual and are not ‘standardized”. They may come and go, or they may be persistent over a span of time. Sometimes PTSD sufferers can be high-functioning, other times they may be more debilitated by the condition.

Get Treatment For PTSD

Those who experience symptoms of PTSD or PTSD-like issues should seek help immediately. Department of Veterans Affairs medical facilities, private care providers, counselors, and therapists can all be helpful in establishing an initial care regimen or refer those suffering from PTSD to a qualified care provider.

The Department of Veterans Affairs has more information on help for PTSD on its’ official site including help finding a therapist.

Those experiencing suicidal feelings or self-destructive urges should get help immediately. The Suicide Crisis Hotline (1-800-273-8255) has a specific resource for veterans and the Department of Veterans Affairs offers a Veterans’ Crisis Hotline confidential chat resource.

You might also find a healthcare provider using the first of its kind medical ecosystem designed to help you more efficiently Connect and collaborate with your medical team.  Safe, secure and easy to use, HealthLynked is the future of healthcare, here today.

Ready to get Lynked?  Go to HealthLynked.com to sign up for Free and get help, right now!

 

Adapted from https://militarybenefits.info/ptsd-awareness-day/

 

 

“Doing It My Way, Testing for HIV” | HIV Testing Day 2018

National HIV Testing Day (NHTD) is an annual observance encouraging people of all ages to get tested for HIV and to know their status.  Too many people are unaware they have HIV. At the end of 2014, an estimated 1.1 million persons aged 13 and older were living with HIV infection in the United States, including an estimated 166,000 (15%, or 1 in 7) persons whose infections had not been diagnosed.

Getting tested is the first step to finding out if you have HIV. If you have HIV, getting medical care, taking medicines regularly and changes in behavior help you live a longer, healthier life and will lower the chances of passing HIV on to others.

Testing is the only way for the Americans living with undiagnosed HIV to know their HIV status and get into care. CDC estimates that more than 90% of all new infections could be prevented by proper testing and linking HIV positive persons to care. HIV testing saves lives! It is one of the most powerful tools in the fight against HIV

How do I know if I am at risk to get HIV? 

Knowing your risk can help you make important decisions to prevent exposure to HIV.  Overall, an American has a 1 in 99 chance of being diagnosed with HIV at some point in his or her lifetime. However, the lifetime risk is much greater among some populations. If current diagnosis rates continue the lifetime risk of getting HIV is:

  • 1 in 6 for gay and bisexual men overall
  • 1 in 2 for African American gay and bisexual men
  • 1 in 4 for Hispanic gay and bisexual men
  • 1 in 11 for white gay and bisexual men
  • 1 in 20 for African American men overall
  • 1 in 48 for African American women overall
  • 1 in 23 for women who inject drugs
  • 1 in 36 for men who inject drugs

Your health behaviors also affect your risk. You can get or transmit HIV only through specific activities. HIV is commonly transmitted through anal or vaginal sex without a condom or sharing injection and other drug injection equipment with a person infected with HIV. Substance use can increase the risk of exposure to HIV because alcohol and other drugs can affect your decision to use condoms during sex. To learn more about your HIV risk and ways to reduce these risks, visit: https://wwwn.cdc.gov/hivrisk/

How do HIV, Viral Hepatitis, and STDs relate to each other? 

Persons who have an STD are at least two to five times more likely than uninfected persons to acquire HIV infection if they are exposed to the virus through sexual contact. In addition, if a person who is HIV positive also has an STD, that person is more likely to transmit HIV through sexual contact than other HIV-infected persons.

Hepatitis B virus (HBV) and HIV are bloodborne viruses transmitted primarily through sexual contact and injection drug use. Because of these shared modes of transmission, a high proportion of adults at risk for HIV infection are also at risk for HBV infection. HIV-positive persons who become infected with HBV are at increased risk for developing chronic HBV infection and should be tested. In addition, persons who are co-infected with HIV and HBV can have serious medical complications, including an increased risk for liver-related morbidity and mortality.

Hepatitis C Virus (HCV) is one of the most common causes of chronic liver disease in the United States. For persons who are HIV infected, co-infection with HCV can result in a more rapid occurrence of liver damage and may also impact the course and management of HIV infection.

How do I protect myself and others from HIV, Viral Hepatitis, and STDs? 

HIV Prevention

Your life matters and staying healthy is important. It’s important for you, the people who care about you, and your community that you know your HIV status.  Knowing give you powerful information to help take steps to keep you and others healthy. You should get tested for HIV, and encourage others to get tested too.

For people who are sexually active, there are more tools available today to prevent HIV than ever before. The list below provides a number of ways you can lower your chances of getting HIV. The more of these actions you take, the safer you can be.

  • Get tested and treated for other STDs and encourage your partners to do the same.All adults and adolescents from ages 13-64 should be tested at least once for HIV, and high-risk groups get tested more often.  STDs can have long-term health consequences.  They can also increase your chance of getting HIV or transmitting it to others. It is important to have an honest and open talk with your healthcare provider and ask whether you should be tested for STDs.  Your healthcare provider can offer you the best care if you discuss your sexual history openly. Find an HIV/STD testing site.
  • Choose less risky sexual behaviors. Oral sex is much less risky than anal or vaginal sex for HIV transmission. Anal sex is the highest-risk sexual activity for HIV transmission. Sexual activities that do not involve the potential exchange of bodily fluids carry no risk for getting HIV (e.g., touching).
  • Use condoms consistently and correctly.
  • Reduce the number of people you have sex with.  The number of sex partners you have affects your HIV risk. The more partners you have, the more likely you are to have a partner with HIV whose viral load is not suppressed or to have a sex partner with a sexually transmitted disease. Both of these factors can increase the risk of HIV transmission.
  • Talk to your doctor about pre-exposure prophylaxis (PrEP). CDC recommends that PrEP be considered for people who are HIIV-negative and at substantial risk for being exposed to HIV.For sexual transmission, this includes HIIV-negative persons who are in an ongoing relationship with an HIV-positive partner. It also includes anyone who 1) is not in a mutually monogamous relationship with a partner who recently tested HIV-negative, and 2) is a gay or bisexual man who has had sex without a condom or been diagnosed with an STD in the past 6 months; or heterosexual man or woman who does not regularly use condoms during sex with partners of unknown HIV status who are at substantial risk of HIV infection (e.g., people who inject drugs or have bisexual male partners). For people who inject drugs, this includes those who have injected drugs in the past 6 months and who have shared injection equipment or been in drug treatment for injection drug use in the past 6 months.
  • Talk to your doctor right away (within 3 days) about post-exposure prophylaxis (PEP) if you have a possible exposure to HIV. An example of a possible exposure is if you have anal or vaginal sex without a condom with someone who is or may be HIV-positive, and you are HIV-negative and not taking PrEP. Your chance of exposure to HIV is lower if your HIV-positive partner is taking antiretroviral therapy (ART) consistently and correctly, especially if his/her viral load is undetectable. Starting medicine immediately (known as post-exposure prophylaxis, or PEP) and taking it daily for 4 weeks reduces your chance of getting HIV.
  • If your partner is HIV-positive, encourage your partner to get and stay on treatment.  ART reduces the amount of HIV virus (viral load) in blood and body fluids. ART can keep people with HIV healthy for many years, and greatly reduce the chance of transmitting HIV to sex partners if taken consistently and correctly.

Hepatitis Prevention

The best way to prevent both Hepatitis A and B is by getting vaccinated.   There is no vaccine available to prevent Hepatitis C.  The best way to prevent Hepatitis C is by avoiding behaviors that can spread the disease, such as sharing needles or other equipment to inject drugs.

STD Prevention

The only way to avoid STDs is to not have vaginal, anal, or oral sex. If you are sexually active, you can do several things to lower your chances of getting an STD, including:

  • Get tested for STDs and encourage your partner(s) to do the same. It is important to have an honest and open talk with your healthcare provider and ask whether you should be tested for STDs.  Your healthcare provider can offer you the best care if you discuss your sexual history openly.  Find an STD testing site.
  • Get vaccinated. Vaccines are safe, effective, and recommended ways to prevent hepatitis A, hepatitis B, and HPV.
  • Be in a sexually active relationship with only one person, who has agreed to be sexually active only with you.
  • Reduce your number of sex partners.  By doing so, you decrease your risk for STDs. It is still important that you and your partner get tested, and that you share your test results with one another.
  • Use a condom every time you have vaginal, anal, or oral sex. Correct and consistent use of the male latex condomis highly effective in reducing STD transmission.

What puts me at risk for HIV, Viral Hepatitis, and STDs? 

Risks for HIV

The most common ways HIV is transmitted in the United States is through anal or vaginal sex or sharing drug injection equipment with a person infected with HIV. Although the risk factors for HIV are the same for everyone, some racial/ethnic, gender, and age groups are far more affected than others.

What puts me at risk for Hepatitis A?

Hepatitis A is usually spread when a person ingests fecal matter — even in microscopic amounts — from contact with objects, food, or drinks contaminated by the feces or stool of an infected person. Due to routine vaccination of children, Hepatitis A has decreased dramatically in the United States. Although anyone can get Hepatitis A, certain groups of people are at higher risk, including men who have sex with men, people who use illegal drugs, people who travel to certain international countries, and people who have sexual contact with someone who has Hepatitis A.

What puts me at risk for Hepatitis B?

Hepatitis B is usually spread when blood, semen, or another body fluid from a person infected with the Hepatitis B virus enters the body of someone who is not infected. This can happen through sexual contact with an infected person or sharing needles, syringes, or other drug-injection equipment. Hepatitis B can also be passed from an infected mother to her baby at birth.

Among adults in the United States, Hepatitis B is most commonly spread through sexual contact and accounts for nearly two-thirds of acute Hepatitis B cases. Hepatitis B is 50–100 times more infectious than HIV.

What puts me at risk for Hepatitis C?

Hepatitis C is usually spread when blood from a person infected with the Hepatitis C virus enters the body of someone who is not infected. Today, most people become infected with the Hepatitis C virus by sharing needles or other equipment to inject drugs. Hepatitis C was also commonly spread through blood transfusions and organ transplants prior to the early 1990’s. At that time, widespread screening of the blood supply began in the United States, which has helped ensure a safe blood supply.

STDs

Risks for  Genital Herpes

Genital herpes is a common STD, and most people with genital herpes infection do not know they have it.   You can get genital herpes from an infected partner, even if your partner has no herpes symptoms.  There is no cure for herpes, but medication is available to reduce symptoms and make it less likely that you will spread herpes to a sex partner.

Risks for Genital Human Papillomavirus (HPV)

HPV is so common that most sexually active people get it at some point in their lives. Anyone who is sexually active can get HPV, even if you have had sex with only one person. In most cases, HPV goes away on its own and does not cause any health problems. But when HPV does not go away, it can cause health problems like genital warts and cancer. HPV is passed on through genital contact (such as vaginal and anal sex). You can pass HPV to others without knowing it.

Risks for Chlamydia

Most people who have chlamydia don’t know it since the disease often has no symptoms.  Chlamydia is the most commonly reported STD in the United States.  Sexually active females 25 years old and younger need testing every year. Although it is easy to cure, chlamydia can make it difficult for a woman to get pregnant if left untreated.

Risks for Gonorrhea

Anyone who is sexually active can get gonorrhea, an STD that can cause infections in the genitals, rectum, and throat. It is a very common infection, especially among young people ages 15-24 years. But it can be easily cured.  You can get gonorrhea by having anal, vaginal, or oral sex with someone who has gonorrhea. A pregnant woman with gonorrhea can give the infection to her baby during childbirth.

Risks for Syphilis

Any sexually active person can get syphilis. It is more common among men who have sex with men. Syphilis is passed through direct contact with a syphilis sore. Sores occur mainly on the external genitals, anus, or in the rectum. Sores also can occur on the lips and in the mouth. A pregnant women with syphilis can give the infection to her unborn baby.

Risks for Bacterial Vaginosis

BV is common among women of childbearing age. Any woman can get BV, but women are at a higher risk for BV if they have a new sex partner, multiple sex partners, use an intrauterine device (IUD), and/or douche.

Managing Your Appointments

HIV is a treatable condition. If you are diagnosed early, get on antiretroviral therapy (ART), and adhere to your medication, you can stay healthy, live a normal life span, and reduce the chances of transmitting HIV to others. Part of staying healthy is seeing your HIV care provider regularly so that he or she can track your progress and make sure your HIV treatment is working for you.

Your HIV care provider might be a doctor, nurse practitioner, or physician assistant. Some people living with HIV go to an HIV clinic; others see an HIV specialist at a community health center, Veterans Affairs clinic, or other health clinic; and some people see their provider in a private practice. Current guidelines recommend that most people living with HIV see their provider for lab tests every 3 to 4 months. Some people may see their provider more frequently, especially during the first two years of treatment or if their HIV viral load is not suppressed (i.e. very low or undetectable). Current guidelines say that people who take their medication every day and have had a suppressed viral load at every test for more than 2 years only need to have their lab tests done two times a year.

In addition to seeing your HIV care provider, you may need to see other health care practitioners, including dentists, nurses, case managers, social workers, psychiatrists/psychologists, pharmacists and medical specialists. This may mean juggling multiple appointments, but it is all part of staying healthy. You can help make this easier by preparing a plan for yourself.

Before Your Visit

For many people living with HIV, appointments with their HIV care provider become a routine part of their life. These tips may help you better prepare for your visits to your HIV care provider and get more out of them:

  • Start with a list or a notebook. Write down any questions you have before you go. (The Department of Veterans Affairs offers a useful list of sample questions you can bring with you.)
  • Make a list of your health and life goals so that you can talk about them with your HIV provider and how she/he can help you reach them.
  • Make a list of any symptoms or problems you are experiencing that you want to talk to your provider about.
  • Bring a list of all the HIV and non-HIV medications that you are taking (or the medications themselves), including over-the-counter medications, vitamins, or supplements. Include a list of any HIV medications you may have taken in the past and any problems you had when taking them.
  • Bring along a copy of your medical records if you are seeing a new provider who does not already have them. You have the right to access your medical records and having copies of your records can help you keep track of your lab results, prescriptions, and other health information. It can also help your new provider have a better understanding of your health history. The best way to do this is by using a global, portable personal health record like the one you will maintain here at HealthLynked.
  • Be prepared to talk about any changes in your living situation, relationships, insurance, or employment that may affect your ability to keep up with your HIV appointments and treatment or to take care of yourself. Your provider may be able to connect you with resources or services that may assist you.
  • Be on time. Most healthcare providers have full appointment schedules—if you are late, you throw the schedule off for everyone who comes after you. If you are late, there is a chance your provider will not be able to see you the same day.

During Your Visit

  • If your provider wants to run some lab tests during your visit, make sure you understand what the lab tests are for and what your provider will do with the results. If you don’t understand, ask your provider to explain it in everyday terms. Typically, you will be asked to give a sample (blood, urine) during your visit and your provider’s office will call you with your results in a few days. Keep track of your results and call your provider back if you have any questions.
  • Be honest. Your provider isn’t there to judge you, but to make decisions with you based on your particular circumstances. Talk about any HIV medication doses you have missed. Tell your provider about your sexual or alcohol/drug use history. These behaviors can put you at risk of developing drug resistance and getting other sexually transmitted infections (STIs) as well as hepatitis. Your provider will work with you to develop strategies to keep you as healthy as possible.
  • Describe any side effects you may be having from your HIV medications. Your provider will want to know how the HIV medications are affecting your body in order to work with you to solve any problems and find the right combination of medications for you.
  • Ask your provider about your next visit and what you should bring to that appointment.
  • Ask for a list of your upcoming appointments when you check out. Work with your case manager, if you have one, to develop a system to help you remember your appointments, such as a calendar, app, or text/e-mail reminders.

Asking Questions and Solving Problems

It’s important for you to be an active participant in your own health care and it’s your right to ask questions. You may need to direct your questions to different people, depending on what you need/want to know:

HIV care providers (doctors, nurse practitioners, physician assistants) can answer specific questions about a wide range of issues that affect your health. They can also help you find resources and solutions to problems you may have that affect your health, including:

  • Your prognosis (how your HIV disease is affecting your body)
  • How to manage any symptoms you may be experiencing
  • Medication issues, including medication changes, new medications, and how the HIV medications may interact with other medications you take.
  • Sexual health issues, including questions about any sexual symptoms you may be having, and how you can prevent or treat STIs, and how you can prevent transmitting HIV to your partner(s).
  • Family planning considerations, including your goals; birth control options for you and/or your partner, if relevant; your options for having children should you wish to do so; and, if you are an HIV-positive woman who is pregnant or considering getting pregnant, how you can reduce the risk of transmitting HIV to your baby
  • Substance use issues, including how alcohol/drug use can affect your HIV treatment and overall health, and whether you should be referred for substance abuse treatment
  • Mental health issues, including questions about any mental health symptoms you may be having, and whether you should be referred for mental health treatment
  • Referrals for other medical issues you may be experiencing
  • The meaning of lab test results
  • The need for surgical procedures, if relevant
  • Medication adherence strategies (tips for keeping up with your medication and ensuring you take it as scheduled and exactly as prescribed)
  • Any clinical trials or research studies that may be relevant for you
  • Information about resources and services that can help you with issues or challenges you may be having that affect your health.

Nurses and case managers often have more time to answer questions about what you discuss with your provider and to help identify solutions to problems that are affecting your health, particularly around:

  • Understanding your HIV treatment plan, including how many pills of each medicine you should take; when to take each medicine; how to take each medicine (for example, with or without food); and how to store each medicine
  • Understanding possible side effects from your HIV medication and what you should do if you experience them
  • Challenges you may have in taking your medications and/or keeping your medical appointments, and strategies for overcoming these challenges
  • Resources to help you better understand lab reports, tests, and procedures
  • Mental health and/or substance abuse treatment, housing assistance, food assistance, and other resources that exist in your community
  • Insurance and pharmacy benefits, and other aspects of paying for care
  • Understanding other medical conditions you may have
  • How to quit smoking and resources that are available to assist you
  • Information about resources and services that can help you with issues or challenges you may be having that affect your health.

If you are HIV positive, attending your medical appointments is one of the most important things you can do to ensure your HIV is optimally managed. Make sure you are ready for your appointments with HealthLynked.  Using our novel healthcare ecosystem, you can collate your medical information in one place and Connect there with the physicians who care for you.

Ready to get Lynked?  Go to HealthLynked.com today to sign up for Free!

 

Adapted from:

HIV.org

CDC.foc

Aidsinfo.NIH.gov

 

 

 

 

 

14 Bolts of Inside[r] Info on Lightning | National Safety News

This weekend, for Father’s Day, I had the opportunity to celebrate early with my oldest, her husband and their newborn.  They asked me what I wanted to do, and I volunteered a boat ride to a distant restaurant on the lake we all love.  I say this, but I know my wife, wisely, does not always enjoy the ride, mostly because of the wicked weather that often kicks up on the warm afternoons where we live.

We always check the satellite and motored out after seeing we were clear for the rest of the day.  After dinner, we checked again before shoving off to see a few storms were popping up about 45 miles away.  NO threat to our return leg.

As we headed home, a cloud to the east, where we were headed, started to take on a more ominous shape and started spitting a little rain.  Then, it deeply darkened, and streaks of lightning shot to earth underneath.

We skirted the storm for 30 minutes and headed to a place we knew we could find shelter.  We hunkered down for about an hour, then headed home, a little more tired but safe after the slight scare.  While we did a lot of things right, I recognize now, we also were at significant risk.  The wide eyed look of my granddaughter will always remind me of this.

Summertime across the country means barbecues, festivals, sporting events, boating, hitting the beach, camping, and many other recreational activities. In short, summertime means a lot more people are spending a lot more time in the great outdoors.

We always look forward to the outdoor adventuring this time of the year brings, but it is also the peak season for one of the nation’s deadliest weather phenomena — lightning. Lightning typically receives less attention than other storm-related killers because it does not result in mass destruction or mass casualties like tornadoes, floods, tsunamis or hurricanes often do.

Consider these lightning statistics:

  • About 25 million cloud-to-ground lightning strikes occur in the United States each year. Around the globe, there are about 100 strikes every second!
  • Over the last 30 years, the U.S. has averaged 51 lightning fatalities per year. The great news:  2017 was the least lethal year since we started recording the stats in 1940, with only 16 deaths.  This is most likely due to increasing awareness.
  • Only about 10% of people struck by lightning are actually killed. The other 90% must cope with varying degrees of discomfort and disability, sometimes for the rest of their lives.
  • People struck by lightning are not electrified! They will need your immediate medical attention or first aid.  Help them immediately.
  • Typically, the vast majority of lightning victims each year are male (in 261 instances from 2006-2013, 81% of lightning fatalities were male and 19% were female).

The purpose of Lightning Safety Awareness Week is to educate and raise awareness about the hazards of lightning in order to lower the number of deaths and injuries caused by lightning strikes. Remember, lightning makes every single thunderstorm a potential killer, whether the storm produces one single bolt or ten thousand bolts. 

 Lightning Fatality Statistics

From 2006 through 2017, 376 people were struck and killed by lightning in the United States.  Almost two thirds of the deaths occurred to people who had been enjoying outdoor leisure activities.  The common belief that golfers are responsible for the greatest number of lightning deaths was shown to be a myth.  During this 12-year period fishermen accounted for more than three times as many fatalities as golfers, while beach activities and camping each accounted for about twice as many deaths as golf.  From 2006 to 2017, there were a total of 34 fishing deaths, 22 beach deaths, 19 camping deaths, and 17 boating deaths.

Of the sports activities, soccer saw the greatest number of deaths with 12, as compared to golf with 10.  Around the home, yard work (including mowing the lawn) accounted for 14 fatalities.  For work-related activities, ranching/farming topped the list with 17 deaths.

Males accounted for 80% of all fatalities, and more than 90% of the deaths in the fishing, sports and work categories.  Females had comparatively fewer deaths than men in every category, with their highest percentages in the boating-related activities (35%) and routine daily/weekly activities (34%).

June, July, and August are the peak months for lightning activity across the United States and the peak months for outdoor summer activities.  As a result, more than 70% of the lightning deaths occurred in the months of June, July, and August, with Fridays, Saturdays, and Sundays having slightly more deaths than other days of the week.

Ages of the victims varied from young children to older adults with the greatest number of fatalities between the ages of 10 and 60.  Within that age range, there was a relative minimum in deaths for people in their 30s, possibly due to parents of young children being less involved in vulnerable activities.

Based on the media reports of the fatal incidents, many victims were either headed to safety at the time of the fatal strike or were just steps away from safety.  Continued efforts are needed to convince people to get inside a safe place before the lightning threat becomes significant.  For many activities, situational awareness and proper planning are essential to safety.

To put this all into perspective, while you are more likely to be struck TWICE  by lightning than win the lottery, you are TWICE as likely to be killed by a dog attack than lightning.  Some small comfort.

Lightning Myths and Facts

 

Myth: A lightning victim is electrified. If you touch him, you’ll risk being electrocuted.
Fact: The human body does not store electricity, and lightning victims require immediate medical attention. It is perfectly safe to touch a lightning victim in order to give them first aid. Call 911 for help.

Myth: If it’s not raining or there aren’t any clouds overhead, you’re safe from lightning.
Fact: Lightning often strikes several miles from the center of a thunderstorm, far outside the rain or thunderstorm cloud. In fact, “bolts from the blue” can strike as far as 25 miles out from the parent thunderstorm. That’s why it’s important to seek shelter at the first indication of a thunderstorm and stay there until 30 minutes after the last clap of thunder.

Myth: The rubber soles of shoes or rubber tires on a car will protect you from a lightning strike.
Fact: Rubber-soled shoes and rubber tires provide NO protection from lightning, but most vehicles with metal tops and sides do provide adequate shelter from lightning because the charge travels through the metal frame and eventually into the ground. Just be sure to avoid contact with anything inside the vehicle that conducts electricity. Remember, convertibles, motorcycles, bicycles, open-shelled outdoor recreational vehicles and cars with fiberglass shells offer no protection from lightning.

Myth: “Heat Lightning” occurs after very hot summer days and poses no threat.
Fact: Many people incorrectly think that “heat lightning” is a specific type of lightning. Actually, it is just lightning from a thunderstorm that is too far away for any thunder to be heard (thunder is seldom heard beyond 10 miles under ideal conditions). If the storm approaches, the same lightning safety guidelines above should be followed.

Myth: Lightning never strikes the same place twice.
Fact: Lightning often strikes the same place or object repeatedly, especially if it’s tall, pointy, and isolated. The Empire State Building is struck by lightning nearly 100 times each year.

Myth: If caught outside during a thunderstorm, you should seek shelter under a tree.
Fact: Seeking shelter under a tree is one of the leading causes of lightning related fatalities. Remember, NO PLACE outside is safe when thunderstorms are in the area. If you are caught outside in a thunderstorm, keep moving toward a safe shelter.

Myth: Metal structures or metal on the body (jewelry, watches, etc.) attract lightning.
Fact: The presence of metal has no bearing on where lightning will strike. Mountains are made of rock but get struck by lightning many times a year. Rather, an object’s height, shape, and isolation are the dominant factors that affect its likelihood of being struck by lightning. While metal does not attract lightning, it obviously does conduct electricity, so stay away from metal fences, railings, bleachers, etc. during a thunderstorm.

Myth: If caught outside during a thunderstorm, you should lie flat on the ground.
Fact: NO PLACE outside is safe when thunderstorms are in the area. If you are caught outside in a thunderstorm, keep moving toward a safe shelter.

 Lightning Safety Guidelines

Lightning is one of the most erratic and unpredictable characteristics of a thunderstorm. Because of this, no one can guarantee an individual or group absolute protection from lightning. However, knowing and following proven lightning safety guidelines can greatly reduce the risk of injury or death.

Most lightning victims are not struck during the worst of a thunderstorm but rather before or after the storm reaches its greatest intensity. This is because many people are unaware that lightning can strike as far as 25 miles away from its parent thunderstorm – much farther out from the area of rainfall within the storm!  “Blue sky” lightning is common at 10 miles from an area storm.

Therefore, if you can hear thunder, you are within striking distance. Seek safe shelter immediately. Remember this lightning safety rule: WHEN THUNDER ROARS, GO INDOORS…and stay there until 30 minutes after the last clap of thunder. Do not wait for the rain to start before you decide to seek shelter, and do not leave shelter just because the rain has ended.

The best way to protect yourself and your family from the dangers of thunderstorms is to be prepared. If you have outdoor plans, be sure to familiarize yourself with the latest weather forecast before heading out. Upon arriving on-site, determine where you will seek shelter in the event of a thunderstorm and how long it would take to reach that shelter. A sturdy, enclosed structure with plumbing and electrical wiring is safest, but if one is not available most enclosed metal vehicles are safe alternatives.

Cancel or postpone outdoor activities if thunderstorms develop.  During your outdoor activities, keep an eye to the sky for developing thunderstorms. If thunder is heard, if lightning is seen, or even if thunderclouds are developing, get to your place of shelter without delay! Have a lightning safety plan.

WHERE NOT TO GO:

Not all types of buildings or vehicles are safe during thunderstorms. Buildings with exposed sides are NOT safe(even if they are “grounded”). These include beach shacks, metal sheds, picnic shelters/pavilions, carports, and baseball dugouts. Porches are dangerous as well.

Convertible vehicles offer no safety from lightning, even if the top is up. Other vehicles which are NOT safe during thunderstorms are those with open cabs, such as golf carts, tractors, and construction equipment.

WHERE TO GO:

The safest location during a thunderstorm is inside a large enclosed structure with plumbing and electrical wiring. These include shopping centers, schools, office buildings, and private residences. If lightning strikes the building, the plumbing and wiring will conduct the electricity and eventually direct it into the ground.

If no substantial buildings are available, then an enclosed metal vehicle such as an automobile, van, or school bus would be a suitable alternative.

While being inside a house or other building with electrical wiring and plumbing is your safest option during a thunderstorm, it does not guarantee you will be 100% safe from lightning. There are still some lightning safety guidelines you must follow while inside a place of shelter to keep yourself safe.

  • Don’t use corded phones:  Using a corded phone during a thunderstorm is one of the leading causes of indoor lightning injuries. However, it IS safe to use cordless or cell phones as long as they are not being charged.
  • Stay away from windows and doors:Sitting on an open porch to watch a thunderstorm is also dangerous. It is best to be in an interior room during a thunderstorm.
  • Don’t touch electrical equipment or cords:  Any device that uses electricity (e.g. computers, televisions, household appliances, etc.) is susceptible to a lightning strike. Electrical surges caused by lightning can damage electronics (even at some distance from the actual strike), and a typical surge protector will do little to protect the device (or the person using it) if lightning should strike. So, consider unplugging certain appliances or electronics, but for your own safety do this BEFORE the storm arrives.
  • Avoid plumbing:  Metal plumbing and the water inside are both very good conductors of electricity. Therefore, do not wash your hands or dishes, take a shower or bath, do laundry, etc. during a thunderstorm.
  • Refrain from touching concrete surfaces:Lightning can travel through the metal wires or bars in concrete walls and flooring, such as in the basement or garage.
  • If inside a vehicle:  Roll the windows up and avoid contact with any conducting paths leading to the outside of the vehicle (e.g. metal surfaces, ignition, portable electronic devices plugged in for charging, etc.).

While we won’t be there to warn you of an impending strike, we will always be there with Ready medical Information if you ever need to call for emergency services.  With HealthLynked, you are able to compile and safely collate all of your medical information in one convenient place should you ever need to access it fast.

Come in out of the rain and steer clear of the storm of finding a physician just right for you.  Go to HealthLynked.com today to sign up for Free and take comfort knowing your health information is with you wherever you may go….

Stay safe!

Sources:

weather.gov

nationalgeographic.com

  

 

 

 

World Sickle Cell Day | Symptoms and Emerging New Treatments

Approximately 70,000 to 100,000 Americans have sickle cell disease.  Though rare, it is the the most common form of inherited blood disorders. In Africa, the burden is much higher – Sub-Saharan Africa has an estimated 64% of the 300, 000 people born annually with sickle cell disease in the world,  Sickle Cell Day each June 19th provides an opportunity to examine progress and persistent challenges in managing the disease.

Sickle Cell, present in affected individuals at birth, causes the production of abnormal hemoglobin. Normal hemoglobin protein, which resides inside red blood cells, attaches to oxygen in the lungs and carries it to all parts of the body. Healthy red blood cells are flexible enough to move through the smallest blood vessels.

In sickle cell disease, the hemoglobin is abnormal, causing red blood cells to be rigid and shaped like a sickle – the shape from which the disease takes its name.  In order for a child to inherit sickle cell disease, both parents must have either sickle cell disease (two sickle cell genes) or sickle cell trait (one sickle cell gene). There are variations of sickle cell disease called sickle C or sickle thalassemia, which are serious conditions but sometimes less severe. If you have sickle cell disease, you will pass one sickle cell gene to your children.

Signs and symptoms of sickle cell disease usually begin in early childhood. Characteristic features of this disorder include a low number of red blood cells (anemia), repeated infections, and periodic episodes of pain. The severity of symptoms varies from person to person. Some people have mild symptoms, while others are frequently hospitalized for more serious complications.

Sickle cells can get stuck and block blood flow, causing pain and infections. Complications of sickle cell disease occur because the sickled cells block blood flow to specific organs. The worst complications include stroke, acute chest syndrome (a condition that lowers the level of oxygen in the blood), organ damage, other disabilities, and even premature death.

These signs and symptoms of sickle cell disease are caused by the “sickling” of red blood cells. When red blood cells sickle, they also break down prematurely, which can lead to anemia. Anemia can cause shortness of breath, fatigue, and delayed growth and development in children. The rapid breakdown of red blood cells may also cause yellowing of the eyes and skin, which are signs of jaundice.

Painful episodes can occur when sickled red blood cells- stiff and inflexible – get stuck in small blood vessels. These episodes deprive tissues and organs of oxygen-rich blood and can lead to organ damage, especially in the lungs, kidneys, spleen, and brain.

A particularly serious complication of sickle cell disease is high blood pressure in the blood vessels that supply the lungs (pulmonary hypertension). Pulmonary hypertension occurs in about one-third of adults with sickle cell disease and can lead to heart failure.

Mutations in the HBB gene cause sickle cell disease.

Hemoglobin consists of four protein subunits; typically, two alpha-globin subunits and two beta-globin subunits. The HBB gene provides instructions for making beta-globin. Variations of beta-globin result from different mutations in the HBB gene. One particular HBB gene mutation produces an abnormal version of beta-globin known as hemoglobin S (HbS). Other mutations in the HBB gene lead to additional abnormal versions of beta-globin, such as hemoglobin C (HbC) and hemoglobin E (HbE). HBB gene mutations can also result in an unusually low level of beta-globin; this abnormality is called beta thalassemia.

In people with sickle cell disease, at least one beta-globin subunit in hemoglobin is replaced with hemoglobin S. In sickle cell anemia, hemoglobin S replaces both beta-globin subunits in hemoglobin.

In other types of sickle cell disease, just one beta-globin subunit in hemoglobin is replaced with hemoglobin S.  The other beta-globin subunit is replaced with a different abnormal variant, such as hemoglobin C.  For example, people with sickle-hemoglobin C (HbSC) disease have hemoglobin molecules with hemoglobin S and hemoglobin C instead of beta-globin.  If mutations that produce hemoglobin S and beta thalassemia occur together, individuals have hemoglobin S-beta thalassemia (HbSBetaThal) disease.

Sickle Cell Trait

Sickle cell trait is an inherited blood disorder that affects approximately 8 percent of African-Americans. Unlike sickle cell disease, in which patients have two genes that cause the production of abnormal hemoglobin, individuals with sickle cell trait carry only one defective gene and typically live normal lives without health problems related to sickle cell. Rarely, extreme conditions such as severe dehydration and high-intensity physical activity can lead to serious health issues, including sudden death, in individuals with sickle cell trait.

Risk Factors

Sickle cell disease is more common in certain ethnic groups, including:

  • People of African descent, including African-Americans (among whom 1 in 12 carries a sickle cell gene)
  • Hispanic-Americans from Central and South America
  • People of Middle Eastern, Asian, Indian, and Mediterranean descent

Because sickle cell disease symptoms can begin by four months of age, early diagnosis is critical. All newborns in the United States are now tested for the disease. Sickle cell disease can also be identified before birth by testing a sample of amniotic fluid or tissue from the placenta. People who carry the sickle cell gene can seek genetic counseling before pregnancy to discuss options.

Signs and Symptoms

Signs and symptoms of sickle cell disease can be mild or severe enough to require frequent hospitalizations. They may include:

  • Anemia (looking pale)
  • Dark urine
  • Yellow eyes
  • Painful swelling of hands and feet
  • Frequent pain episodes
  • Stunted growth
  • Stroke

Treatment

There are no standard treatments that cure sickle cell disease. However, there are regiments that help people manage and live with the disease. Treatment relieves pain, prevents infections, minimizes organ damage, and controls complications. At times, blood transfusions and other advanced options are needed.

Clinical trials provide access to experimental therapies for treating sickle cell disease. The American Society of Hematology (ASH) provides information on clinical trials for which you may be eligible. Researchers are looking at new drugs and also exploring the use of bone marrow transplants to treat sickle cell disease. Stem cell transplants, associated with significant risks, are appropriate only for some patients with severe forms of sickle cell disease and closely matched donors –  typically family member.

Beyond this, the completion of the Human Genome Project and the use of CRISPR/Cas9 for gene editing have begun to transform the diagnosis and management of disease. Sickle cell disease has been considered a perfect model for genomic research because: 1) it is a monogenic disease and 2.) it has no cure despite the significant incidence of morbidity and mortality. Recent use of gene editing to minimize disease severity, and a single report of a patient who received successful treatment with gene therapy, highlight the potential for translating genome-based knowledge into health benefits for sickle cell patients.

It is important for you to talk with your doctor if you believe you may have sickle cell disease. If you carry the sickle cell trait, make sure you tell your doctor before getting pregnant as well. Depending on your condition, your doctor may refer you to a hematologist, a doctor who specializes in blood conditions.

Finding the right physician or medical care team just got that much easier.  Using HealthLynked, you can locate physicians in your area who know how to help and are focused on giving you the best possible care.  They will collaborate with you to make sure all your relevant and real time health information is available to enhance your wellness.

Ready to get Lynked?  Got to HealthLynked.com to get started for free today.

 

 

Hashtags:

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Week Three of National CMV Awareness Month – “CMV is Preventable”

 

National legislation has been passed designating the month of June as “National Cytomegalovirus Awareness Month” recommending “more effort be taken to counsel women of childbearing age of the effect this virus can have on their children”.   In this thhird week, the theme is “CMV is Preventable”.

The Centers for Disease Control and Prevention (CDC) report that 1 in every 150 children is born with congenital CMV (cytomegalovirus). CMV is the most common congenital (meaning present at birth) infection in the United States and is the most common viral cause of birth defects and developmental disabilities, including deafness, blindness, cerebral palsy, mental and physical disabilities, seizures, and death.

CMV is a common virus, present in saliva, urine, tears, blood, and mucus, and is carried by 75 percent of healthy infants, toddlers, preschoolers, and children who contract the virus from their peers. About 60 percent of women are at risk for contracting CMV during pregnancy, posing a major risk to mothers, daycare workers, preschool teachers, therapists, and nurses. The American College of Obstetricians and Gynecologists (ACOG) and the CDC recommend that OB/GYNs counsel women on basic prevention measures to guard against CMV infection. These include frequent hand washing, not kissing young children on the mouth, and not sharing food, towels, or utensils with them.

CMV is Preventable

  • Pregnant women who already have young children, or who work with young children, are at highest risk of catching CMV
  • CMV is found in home and daycare settings
  • 75% of toddlers have CMV in their urine and saliva in studies at childcare settings
  • Avoid contact with saliva – kiss kids under the age of 6 on the forehead instead of lips or cheek
  • Wash your hands after contact with bodily fluids of children under the age of 6
  • Don’t share utensils, drinks, or toothbrushes with children under the age of 6

Want to help raise awareness of CMV?  Join National CMV’s hashtag awareness campaign and share infographcs, photos, and stories on social media!  National CMV maintains a website-based tagboard – a curated public display of all social media posts with the hashtags #stopcmv and #cmvawareness. You can check out the tagboard by simply scrolling down on their homepage!

Each week of June will have a different themed awareness infographic, as well as ideas for a weekly photo that you can post to social media to tell the world about your experience with CMV. They suggest you get creative and be authentic, even if the suggested photos may not apply to your experience–all of our stories are important!

 

 

#KnowAboutCMV

#CMVAwareness

#pregnancy

#patientcare

#StopCMV

#HealthCare

#HealthLynked

 

 

 

Seven Signs of Autism | Autistic Pride Day

The annual Autistic Pride Day is observed each year on June 18 using an ongoing theme of neurodiversity. The pride label – all colors across the spectrum with an infinity symbol –  is intended to encourage a celebration of autistic differences, rather than reinforcing stereotypical perceptions of autism as a disease. Autistic Pride Day educates people directly, drawing on the experiences of autistic people themselves and celebrating autistic lives.  The aim: to promote progress in awareness and recognize the achievements of autistic people.

The first event was celebrated in June 2005, and it is lead by several organizations supporting the children and their families who are living with autism.  Society is still far from understanding and accepting the range of autistic differences, and changing attitudes is a necessary step towards enabling autistic people to lead fulfilling lives without discrimination, allowing them to participate in and contribute to all aspects of society.

What is Autism?

Autism spectrum disorders (ASD) are a set of diverse neural development variables that are characterized most commonly by difficulty with social interactions and behavioral integration while providing potentially heightened or advanced skills in certain areas. The condition starts in childhood, and the characteristics may be visible within the first two years of the child’s development.

Manifested in a range of presentations affecting how an autistic person thinks, learns, uses their senses, moves their body, communicates, and relates to other people, the spectrum is increasingly described by the autistic community, and by some clinicians and researchers, as a condition rather than a disorder.

Prevalence is 1–1·5% of the population – that is 1 in 68 children in the US, according to the US Centers for Disease Control and Prevention.  Autism has previously been thought to be more common in men and boys, but current debates suggest this might be an effect of basing diagnosis on behavior, which varies between sexes. Diagnoses centered on behavioral issues can lack precision, as behavior may be suppressed, camouflaged, and “normalized” by autistic people in order to fit in and avoid social stigma.

Causes of Autism

There is great concern rates of autism have been increasing in recent decades without acceptable explanation as to why.  Scientists believe both genetics and environment likely play a role in ASD. Researchers have identified a number of genes associated with the disorder. Imaging studies of people with ASD have found differences in the development of several regions of the brain.

Studies suggest that ASD could be a result of disruptions in normal brain growth very early in development. These disruptions may be the result of defects in genes that control brain development and regulate how brain cells communicate with each other. Autism is more common in children born prematurely.

Environmental factors may also play a role in gene function and development, but no specific environmental causes have yet been identified. The flawed theory that parental practices are responsible for ASD has long been disproved.

Symptoms of Autism

Neurodiversity encompasses the breadth of autistic characteristics; every person has a unique experience of autistic life. A society that accepts neurodiversity requires cooperation and input from multiple stakeholders, including autistic people, neurologists and mental health professionals, parents, teachers, researchers, and employers. Society needs to embrace neurodiversity in order to accept differences and variation, and to reduce stigma. Mental health professionals can provide interventions and support if there is an understanding of the details of autistic experience.

The  terms “Autistic” and “autism spectrum” often are used to refer inclusively to people who have an official diagnosis on the autism spectrum or who self-identify with the Autistic community. While all Autistics are as unique as any other human beings, they share some characteristics typical of autism:

  1. Different sensory experiences.For example, heightened sensitivity to light, difficulty interpreting internal physical sensations, hearing loud sounds as soft and soft sounds as loud, or synesthesia.
  2. Non-standard ways of learning and approaching problem solving.For example, learning “difficult” tasks (e.g. calculus) before “simple” tasks (e.g. addition), difficulty with “executive functions,” or being simultaneously gifted at tasks requiring fluid intelligence and intellectually disabled at tasks requiring verbal skills.
  3. Deeply focused thinking and passionate interests in specific subjects.“Narrow but deep,” these “special interests” could be anything from mathematics to ballet, from doorknobs to physics, and from politics to bits of shiny paper.
  4. Atypical, sometimes repetitive, movement.This includes “stereotyped” and “self-stimulatory” behavior such as rocking or flapping, and also the difficulties with motor skills and motor planning associated with apraxia or dyspraxia.
  5. Need for consistency, routine, and order.For example, holidays may be experienced more with anxiety than pleasure, as they mean time off from school and the disruption of the usual order of things. People on the autistic spectrum may take intense pleasure in organizing and arranging items.
  6. Difficulties in understanding and expressing language as used in typical communication, both verbal and non-verbal. This may manifest similarly to semantic-pragmatic language disorder. It’s often because a young child does not seem to be developing language that a parent first seeks to have a child evaluated. As adults, people with an autism spectrum diagnosis often continue to struggle to use language to explain their emotions and internal state, and to articulate concepts (which is not to say they do not experience and understand these).
  7. Difficulties in understanding and expressing typical social interaction.For example, preferring parallel interaction, having delayed responses to social stimulus, or behaving in an “inappropriate” manner to the norms of a given social context (for example, not saying “hi” immediately after another person says “hi”).

Diagnosing Autism

An autism diagnosis most commonly takes place in the first 2 years of a child’s life—early detection brings more effective intervention. However, there is a need to improve detection and accommodation of autism in adulthood. A diagnosis late in life can help people to understand why they feel they are different to others, can help to understand accompanying mental health challenges, and may provide the beginning of a helpful clinical pathway—as well as providing clarity, it can be a signpost to relevant support.

Autism is a relatively new diagnosis, becoming widely used only since the 1990s. In the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), published in May, 2013, the diagnostic criteria were broadened as various diagnostic entities were pulled together.  Pre-school children were included, and prevalence subsequently increased considerably as a range of autistic traits were newly identified as part of the spectrum.

Neurological research in the field remains difficult and sometimes controversial, and there is an ongoing lack of knowledge of the neurological bases for autism. Future understanding of causes, including genetic causes, will hopefully help to shape a more tailored approach to diagnosis and treatment management.

Treatment of Autism

Regarding treatment and societal support, external systems need to adapt to embrace variations in behavior that include adults with late diagnoses. This shift is elusive: Public and even medical perception still has some way to go to embrace differences among those with autism.  Each child or adult with autism is unique and, so, each autism intervention plan should be tailored to address specific needs.

Management can be complex, as people with autism are more likely to have additional mental health diagnoses and higher rates of suicidal ideation. Approaches to intervention need to be highly personalized to suit each individual and to identify comorbidities correctly. Professionals also need to understand and accept neurodiversity—a lack of empathy could lead to a repeat of past approaches that forced people to conform to “normal” behavior, which is neither effective nor acceptable.

There is no cure for autism spectrum disorder, but there are several behavioral and therapeutic interventions that may improve some symptoms.  Intervention can involve behavioral treatments, medicines or both. Many persons with autism have additional medical conditions such as sleep disturbance, seizures and gastrointestinal (GI) distress. Addressing these conditions can improve attention, learning and related behaviors.

Early intensive behavioral intervention involves a child’s entire family, working closely with a team of professionals. In some early intervention programs, therapists come into the home to deliver services. This can include parent training with the parent leading therapy sessions under the supervision of the therapist. Other programs deliver therapy in a specialized center, classroom or preschool.

Typically, different interventions and supports become appropriate as a child develops and acquires social and learning skills. As children with autism enter school, for example, they may benefit from targeted social skills training and specialized approaches to teaching.  Adolescents with autism can benefit from transition services that promote a successful maturation into independence and employment opportunities of adulthood.

Typically, autism treatment involves:

  • Behavioral and educational interventions – this is where therapists use intensive and high structured skills in training an autistic child so that they can improve language and social skills.
  • Medications – the physician may prescribe drugs that can help in management of some of the symptoms, like depression, anxiety and obsessive-compulsive disorder.

Alternatively, or in addition, novel Therapies are being developed.  These therapies, including light and sound treatments, might be introduced to families living with autism.  Some are controversial, and parents should be cautious before adopting any method.

Purpose of Autistic Pride Day

The day helps to create an awareness  in society  around the condition and how it is managed. The day asserts that autism is not a sickness but rather a state in which the individual affected will exhibit varied characteristics that may provide them with challenges or rewards unlike their peers who do not have autism.  Autistic pride day helps in coming up with initiatives where the public is educated on the challenges that are faced by autism community.

Autistic pride day helps in organizing rights movements for people who are living with autism. The movement is usually led by self advocates of autism who ensure that autistic people are given a voice and are recognized in the society. The movement encourages community members to accept people living with autism in the society.

The autistic pride day also provides a good platform for the care giver to be appreciated. The people who take care of autistic children may have diminished physical and emotional energy as they can be drained while responding to the needs of autistic children. Care givers are encouraged to take care of themselves and to get as much help as possible to provide their best while offering their services.

What can be Done on Autistic Pride Day?

Participation on this day may  include providing information to families that include people who live with autism by teaching them on the causes, signs and symptoms , management and treatment. The family members will also be taught how to participate most fully in the life of someone with autism and to embrace their neurodiversity.

You might provide financial support for the organizations that pioneer autism research or volunteer and give to those groups who promote awareness and provide support to families and those with autism.

Caregivers and those with autism can come together and share their stories of life with autism or loving and caring for people with autism. This will help to reduce any stigmas associated with the disorder as each person expresses themselves.

Message Shared on Autistic Pride Day

Autistic pride day is a time set aside to appreciate and celebrate those who live with autism.  The message shared on this day is that the people who suffer from autism are not sick, they are neurodiverse. Autism should not be viewed as a disease but as a different state of being.

If you are looking for the right specialists and way to really join your care team together, consider HealthLynked.  Our platform is designed so that medical practitioners and the diverse patient population they care for can truly collaborate on wellbeing, and it is designed to especially enhance the efficient exchange of health information.

As teams work to discover the causes and research cures, the effective exchange of relevant health information becomes essential in caring for those with ASD.  Safe, secure and convenient, HealthLynked allows patient members and their providers to immediately share and collaborate on their must up to date medical information. This exchange ensures the best possible care is provided, critical when working with autism.

Ready to get Lynked?  Go to HealthLynked.com today to sign up for free!

 

Sources:

autismspeaks.org

ninds.nih.gov

autisticadvocacy.org

thelancet.com