12 posts from November, 2012

Working Together for an AIDS-Free Generation

Posted November 30th, 2012 by

World AIDS Day Is Saturday, December 1, 2012

Saturday, December 1st, is World AIDS Day (hashtag #WAD2012), a time for re-upping your vigilance and awareness levels about HIV/AIDS.  The global AIDS crisis is not over until an AIDS-free society is achieved, and unfortunately, we’re not there yet.  That’s why the US theme for World AIDS Day 2012 is “Working Together for an AIDS-Free Generation.”

More than 30 years after the first reports of AIDS in the United States, approximately 50,000 Americans are still contracting HIV – the virus that can lead to AIDS – each year.  In addition, nearly 1 in 5 individuals living with HIV is unaware of his or her infection.  That’s why we can’t become complacent about HIV prevention and treatment.

Facing AIDS Is an Ongoing AIDS.gov Social Media Campaign

Join PatientsLikeMe partner AIDS.gov in “Facing AIDS.”  What can you do to help?  Start by reminding everyone you know that they can locate a local HIV testing site by texting their zip code to “KNOWIT” (566948) or using the HIV/AIDS Prevention and Service Provider Locator.  You can also set an example in your peer group by going and getting tested yourself.

Living with HIV?  Connect with the 3,000+ members of PatientsLikeMe’s HIV Community for information, support and advice.  If you know your HIV type (e.g., HIV-1: Group M: Type B), you can now search for those with the same type as you and learn from their experiences, including what medications they’ve taken and how they rate each drug’s effectiveness, costs and side effects.  From Atripla to Truvada to Norvir, discover how our patients evaluate commonly prescribed HIV treatments and read their battle-tested tips.

The point is that working together can improve care – and increase prevention.  Join the millions of Americans working towards an AIDS-free generation today.


PatientsLikeMe at the 2nd Annual White Coat Affair for ALS TDI

Posted November 28th, 2012 by

On Friday, November 2nd, several PatientsLikeMe team members donned their finest to attend the 2nd Annual White Coat Affair, a charity gala benefiting the ALS Therapy Development Institute (ALS TDI).  Founded by PatientsLikeMe Co-Founder and Chairman Jamie Heywood in 1999, ALS TDI is the world’s most advanced research laboratory dedicated to ALS, also known as Lou Gehrig’s disease.

The PatientsLikeMe Team Along with ALS Patient Steve Saling (Front) at the 2nd Annual White Coat Affair for ALS TDI

This gala fundraiser was held in conjunction with ALS TDI’s 8th Annual Leadership Summit, which included in-depth scientific presentations by top ALS researchers, a discussion panel with industry leaders and an awards ceremony honoring individuals who have made extraordinary contributions to ALS research and advocacy.  (View the summit webcast here.)  PatientsLikeMe was a proud sponsor of this annual gathering of the most influential minds in the ALS community.  In particular, we were honored to witness the posthumous awarding of the Stephen Heywood Patients Today Award – given annually to an individual who exemplifies what it means to be an educator, role model and advocate – to beloved PatientsLikeMe member Persevering (Rob Tison).

Keeping with the Laboratory Theme, The Name Cards Were Inspired by the Periodic Table of Elements

Held at the Fairmont Copley Plaza in Boston the next night, A White Coat Affair was an opportunity for summit attendees to unwind and socialize via cocktails, a dinner program, live music and dancing.  In honor of the theme, servers wore white lab coats, name cards were labeled like the periodic table and vases were filled with brightly colored liquid to resemble lab tubes.  A special highlight of the dinner program this year was the Young Perspectives on ALS segment, which featured the stories of two young people living with ALS (Corey Reich and Pete Frates) as well as four young people who are the children of ALS patients (Katie Shambo, Sam Ketchum, Jenn Sutherland and Alex Heywood).

As you might have guessed, Alex Heywood is the son of Stephen Heywood and nephew of PatientsLikeMe Co-Founders Jamie Heywood and Ben Heywood.  Both ALS TDI and PatientsLikeMe were inspired by Stephen’s seven-year battle with ALS, a rapidly progressive neurodegenerative disease with an average life expectancy of two to five years following diagnosis.

Young ALS Patients and the Sons and Daughters of ALS Patients Were the Focus of This Year's Dinner Program

Approximately 350 guests attended A White Coat Affair, helping to raise $450,000 towards ALS TDI’s efforts to discover and develop effective treatments for ALS. After a decade of progress, the institute is entering a time of great promise, with several therapies in clinical trials and their own work on Gilenya (a drug currently approved for treating multiple sclerosis) and other potential therapeutics moving into the clinical realm.  Learn more about ALS TDI’s current research projects here.

To see more photos from the 2nd Annual White Coat Affair, visit the event’s Facebook page.


Honoring Family Caregivers Everywhere

Posted November 26th, 2012 by

Is there a caregiver in your family?  For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness?

November Is National Family Caregivers Month

November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the challenges they face on a daily basis.  Currently more than 65 million Americans (or approximately 29% of the US population) are serving in a caregiver role in any given year, averaging 20 hours per week.  Approximately 66% are women. The value of services these caregivers provide for “free” when caring for older adults is estimated to be $375 billion per year.

Yet what many people may not think about is the economic and health impact on the family caregiver.  Financially, caregiving families have median incomes that are 15% lower than non-caregiving families, and women caregivers are 2.5 times more likely to live in poverty than non-caregivers.  In terms of health and well-being, approximately 40 to 70% of caregivers report clinically significant symptoms of depression, according to one study, while 55% say they skip doctor appointments for themselves.  Read other eye-opening caregiver statistics here.

PatientsLikeMe strives to support and involve caregivers with our “CareTeam” concept, which was developed to include everyone who participates in the care of our patient members.  That could be a spouse/partner, parent, child, doctor, therapist, home health worker, sibling, relative or friend.  Patients can invite caregivers to join PatientsLikeMe, and once they are members, send them a CareTeam invite to link together their profiles.  That way, both the patient and caregiver can stay abreast of how the other is doing physically, emotionally and socially.

ALS patient Persevering’s CareTeam members (his wife and his sister, respectively) are displayed in the “About Me” section of his profile.

Currently, there are more than 7,000 caregivers registered with PatientsLikeMe, many of whom are active users of our forums, who chart their own symptoms and treatments and who are seeking information, guidance and support directly from patients or other caregivers.  Browse their profiles – even if they have no specific health issues, caregivers can monitor their well-being with tools like our InstantMe and Quality of Life surveys – and find out what their life is like today.


What’s Positive About Disease?

Posted November 21st, 2012 by

What Are You Unexpectedly Grateful for?

It may seem counterintuitive, but according to some of our members, there are actually some good things that can come out of being diagnosed with a serious illness.  In the spirit of Thanksgiving – a time when many people are reminded of all the things they have to be grateful for – we thought we would share some of our members’ uplifting sentiments.

From our Fibromyalgia Community, some of the unexpected benefits include:

  • Getting to spend more time with children or grandchildren
  • Taking advantage of “good days” with a little extra gusto
  • Appreciating what you have…and knowing it could be worse
  • Refocusing on new hobbies like gardening and meditation

From our Multiple Sclerosis (MS) Community, some of the unexpected benefits include:

  • Letting go of the pressurized feeling that you have to do it all
  • A deeper understanding of how many people face major challenges
  • Discovering new artistic talents, such as painting or needle work
  • Slowing down the pace of life and prioritizing sleep – without guilt

From our Epilepsy Community, some of the unexpected benefits include:

  • Learning to never judge a person by only what you see
  • Becoming more patient and not taking anything for granted
  • Filtering out fair-weather friends and uncaring partners
  • Having extra motivation to live the healthiest lifestyle possible

What about you?  Have you noticed some positive takeaways from your illness?  Share them in our comments section in honor of Thanksgiving.  And, from everyone at PatientsLikeMe, we wish you and your loved ones a wonderful holiday!


Up Your Awareness of GERD Before Chowing Down This Thanksgiving

Posted November 19th, 2012 by

GERD Causes the Backflow or "Reflux" of Stomach Contents, Causing Uncomfortable Symptoms

GERD Awareness Week, now in its 14th year, takes place November 18-24, 2012.  Yes, the week of Thanksgiving.

Given that many Americans celebrate this holiday with big meals (followed by seconds and thirds!), it’s the perfect time to spread the word about gastroesophageal reflux disease (GERD), which can cause chronic heartburn and acid regurgitation as well as less commonly known symptoms such as laryngitis, a sudden excess of saliva and the sensation of food sticking in the esophagus.

How can you tell if you have GERD versus occasional heartburn?  Typically, when you have GERD or another more serious condition, heartburn will occur more than once a week and often become more severe at night, to the point where it can disrupt sleep.  If frequent bouts of heartburn are keeping you up at night, talk to your doctor.  You can also call the International Foundation for Functional Gastrointestinal Disorders (IFFGD) Helpline at 1-888-964-2001 (toll-free from the US) for information at any time.

Fortunately, treatments are available to combat GERD, which affects up to 1 in 5 adults in the US.  According to the 2,254 patients who are part of the GERD Community at PatientsLikeMe, some of the commonly prescribed medications include Omeprazole (Prilosec), Lansoprazole (Prevacid), Esomeprazole (Nexium) and Ranitidine (Zantac).  Click on each drug name to see the treatment evaluations our patients have submitted regarding effectiveness, side effects, cost and more.

A Snapshot of the GERD Community at PatientsLikeMe

Then, there’s also watching what you eat.  While GERD is not caused by diet, it can be aggravated by certain foods and eating habits.  To make this Thanksgiving a little more pleasant, consider avoiding the following foods and beverages:  chocolate, onions, fried foods, acidic foods, fatty foods, peppermint, caffeine, carbonated beverages and alcohol.  Eating late at night can also contribute to nighttime heartburn that leaves you restless and sleep deprived.

So, if you see family members who may be experiencing GERD, make sure they know the facts…before they dig into those midnight leftovers!


Join the “Now I Know” Video Campaign for National Epilepsy Awareness Month

Posted November 15th, 2012 by

“Today [my son] Jake is living a wonderful life, an extraordinary life, and now I know that’s possible.  When Jake was first diagnosed, we didn’t know that.  Now I know that…and that we’re not alone.”

Actor Greg Grunberg, father of a 16-year-old with epilepsy

Join the "Now I Know" Campaign by Submitting a Video About What You've Learned

When it comes to epilepsy, what do you know now that you wish you knew sooner?

That’s the question the Epilepsy Foundation is asking epilepsy patients and their families to ponder during National Epilepsy Awareness Month, which takes place every November. Share your struggles and successes in a video submission to the “Now I Know” campaign. Visitors to Epilepsy Foundation’s Facebook page will then have to the opportunity to vote on their favorites and share top videos with their social networks.  Ultimately, the top vote getters in each of four regions will win iPads and other prizes.

Affecting more than two million Americans, epilepsy is defined by the Epilepsy Foundation as “a medical condition that produces seizures affecting a variety of mental and physical functions.”  When a person has two or more unprovoked seizures – brief, strong surges of electrical activity affecting part or all of the brain that last anywhere from a few seconds to a few minutes – they are typically considered to have epilepsy.  Symptoms can range from convulsions and loss of consciousness to more subtle signs, such as lip smacking, blank stares and jerking movements in the arms and legs.

A Snapshot of the Epilepsy Community at PatientsLikeMe

More than 7,000 PatientsLikeMe members are sharing their experiences with epilepsy, including their symptoms, treatments and more.  Using our Seizure Meter, members are also able to record their seizure history, including the type of seizure (e.g. clonic seizure, complex partial seizure, tonic-clonic seizure).  What are our members taking to control their epilepsy – and how well is it working?  Check out the hundreds of treatment evaluations submitted for common medications such as Keppra, Lamictal and Topamax and learn from others like you today.


PatientsLikeMe’s Paul Wicks Is a TED2013 Fellow

Posted November 14th, 2012 by

PatientsLikeMe Research & Development Director Paul Wicks, PhD

We are thrilled to announce that PatientsLikeMe Research & Development Director Dr. Paul Wicks, PhD, has been named a TED2013 Fellow.  He is one of 20 individuals to be selected from more than 1,200 candidates to attend the TED2013 conference in Long Beach, California, participate in a preconference bootcamp and receive mentoring from the TED community.

If you’re not familiar with it, TED is a nonprofit devoted to Ideas Worth Spreading.  It started out as a conference designed to bring together people from Technology, Entertainment and Design (T-E-D) and has since evolved into a global movement for sharing big ideas.  In addition to annual conferences in the US and UK (TEDGlobal), which bring together movers and shakers for inspiring talks of 18 minutes or less, TED sponsors local events (TEDx) and shares many of its videotaped talks via TEDTalks and TEDxTalks. (Among them: a 2009 talk by PatientsLikeMe Co-Founder Jamie Heywood, a 2010 talk by Paul Wicks and a 2011 talk by PatientsLikeMe Co-Founder Ben Heywood.)

Click Here to Read About the 20 Individuals Selected as TED2013 Fellows

The theme for the TED2013 conference is “The Young. The Wise.  The Undiscovered.”  Accordingly, this year’s class of TED Fellows represents “young innovators from around the globe, all with insightful, bold ideas that have the potential to influence our world.”  Paul is a perfect fit for this mission, having already been named one of the best young innovators under the age of 35 by MIT’s Technology Review as well as their “Humanitarian of the Year” in 2011.  We know he won’t stay “undiscovered” for long!

A big thanks goes to TEDGlobal 2012 Fellow Max Little, who nominated Paul for this prestigious opportunity.  An applied mathematician who is currently a Postdoctoral Research Fellow at MIT, Max is working on a breakthrough technique to monitor – and potentially screen for – Parkinson’s disease through simple voice recordings.  Learn more about Max’s ingenious idea in his June 2012 TEDTalk below and stay tuned for more coverage of this trailblazing researcher in the coming weeks.


PatientsLikeMe Inducted into the Healthcare Internet Hall of Fame

Posted November 13th, 2012 by

Perhaps you’ve heard of the Basketball Hall of Fame.  Or the Rock and Roll Hall of Fame.  But did you know there’s a Healthcare Internet Hall of Fame?

The Healthcare Internet Hall of Fame Was Founded in 2011.

Formed in 2011, the Healthcare Internet Hall of Fame was established “to honor individuals and organizations that have made outstanding, long-lasting contributions to the healthcare Internet industry” and to preserve the history of this growing space for future generations.  The 2012 Hall of Fame Class will be inducted today at the 16th Annual Healthcare Internet Conference in Las Vegas, Nevada.  And guess what?  We’re one of them!

PatientsLikeMe is thrilled to be one of two inductees in the “Innovative Products/Services” category along with the esteemed Mayo Clinic.  Other 2012 inductees include Mark Gothberg, Editor of eHealthcare Strategy & Trends and Chairman of the eHealthcare Leadership Awards; Ed Bennett, founder of the Hospital Social Network List; and the Community Health Network of Indianapolis.  Inductees are selected by an independent Board of Judges, which this year included Paul Griffiths, Founding Partner and CEO of MedTouch.

We congratulate our fellow inductees and look forward to today’s induction ceremony at the Cosmopolitan Hotel in Las Vegas.


Searching for a Diagnosis: An Interview with Lyme Disease Patient Pampe

Posted November 9th, 2012 by

Lyme Disease Patient Pampe

Getting the right diagnosis can take many years, or in the case of PatientsLikeMe patient Pampe, many decades.  After experiencing her first Lyme disease symptom in 1973, it was not until 2012 that she finally received a diagnosis that explained her many symptoms.  Discover what hindered the process and what’s she learned along the way in our interview with this highly active member, who has contributed more than 12,000 posts to our forum since joining PatientsLikeMe in 2010.

1.  You had a very long journey to discovering your Lyme disease. Where were some of the obstacles?

The main obstacle to an appropriate diagnosis of Lyme disease for me was the lack of knowledge in the traditional Western Medical System. Had my general practitioner (GP) known about the testing for Lyme, I might have been diagnosed 10-12 years earlier. Many people go from doctor to doctor and undergo a horrific array of tests and medications before they find out it is Lyme disease.

2.  We have a new Lyme Disease Forum at PatientsLikeMe. What is that important to you?

After my diagnosis and two other members of the Fibromyalgia Forum discovering they too had Lyme, I think I was pretty vocal in expressing the need for a Lyme Disease Forum. There are several clinical studies indicating that many people with autoimmune disorders, fibromyalgia, chronic fatigue syndrome, multiple sclerosis (MS), ALS and Parkinson’s disease actually have underlying Lyme disease or co-infections.

3.  You have a three-star profile as well as more than 5,600 helpful marks for your forum activity, which means you are one of the most helpful members around! What do you get out of using PatientsLikeMe?

I have always considered it an honor to help people both professionally and as a volunteer. Most people come to PatientsLikeMe in a state of shock, sadness and loneliness. They need support and information, and PatientsLikeMe can provide that in many ways. I have tried to help with support and information. What I get out of it is the absolute joy of seeing someone rise above his/her diagnosis and find new ways of being. It has been my great joy to see 4-5 new people from other forums find a Lyme disease diagnosis after reading some of the information I posted.

4.  Your profile reveals that you have an interest in alternative medicine. Where does that stem from?

During my working life, I was a nurse and psychotherapist. I was lucky to train in areas where alternative, holistic practices were available. I have seen them work and work well in many instances. I personally use alternative care for most of my health needs. There is no doubt that what we put in our bodies (mentally, physically, emotionally or spiritually) affects our health. It seems reasonable to me that we then must look at all those things and change what isn’t working.


What We’re Reading at PatientsLikeMe

Posted November 7th, 2012 by

Here are some of the media items that grabbed our attention recently.

Four Things I Learned from Living with a Chronic Illness
Wise advice from a teenager who had to give up competitive gymnastics and find a new perspective on life after being diagnosed with a disease that causes chronic pain.

Access to Doctors’ Notes Aids Patients’ Treatment
A new study finds that patients better understand their condition and feel more in control when they can read their doctors’ notes (something you’re legally entitled to access).

Why We Need Ecological Medicine
Do we need exposure to a diversity of bacteria and germs for optimal immune health?  A thought-provoking essay about the “germ theory,” “hygiene hypothesis” and more.

What We're Reading at PatientsLikeMe.  Image Courtesy of Stock Free Images.

Coming Next:  Using an App as Prescribed
A New York Times piece about whether healthcare apps – now regulated by the FDA – could reduce costs and change the way we monitor health.

Help with ALS via Twitter
An article about our partner ALS Untangled and how they are applying scientific rigor to the investigation of alternative therapies in ALS, having reviewed 45 to date.

Mining the Internet for Speedier Alerts on Drugs
The Wall Street Journal examines the results of a study showing that Internet search algorithms can detect adverse events for certain drugs ahead of FDA warnings.


Building a True Picture of Diabetes During American Diabetes Month

Posted November 5th, 2012 by

Get a Clearer Picture of Diabetes During American Diabetes Month This November

November is American Diabetes Month, and this year, the American Diabetes Association is working to reshape the understanding of diabetes.  The goal is to raise awareness of the fact that diabetes is life-changing disease with a huge societal impact – and not a minor hindrance, as some people think.

As part of this mission, the ADA is asking patients with type 1 diabetes and type 2 diabetes to send in a photo that captures what life with diabetes is like.  What are the everyday challenges and considerations?  Help the ADA build a mosaic of the “true picture of diabetes” and CVS will donate a $1 for every photo uploaded, up to $25,000.

Upload Your Photo of Life with Diabetes, and CVS Will Donate $1 for Each Photo.

Another way to get a clearer picture is to consider some of the alarming facts about diabetes, which is projected to affect as many as one in three Americans by 2050:

  • 26 million Americans are currently living with the disease
  • 79 million Americans have prediabetes, putting them at risk for type 2 diabetes
  • Two out of three people with diabetes die from heart attack or stroke
  • Diabetes is the leading cause of kidney failure and new cases of adult blindness
  • The cost of diabetes is $1 out of every $5 in total healthcare costs

If you are living with diabetes, or you’re at risk for developing it, connect with others like you at PatientsLikeMe.  There are more than 1,000 type 1 diabetes patients and more than 4,700 patients type 2 diabetes patients in our community who are sharing experiences with blood glucose controlsymptoms, treatments and more.

How do they evaluate common medications such as Metformin and Insulin Glargine?  How many have undergone a kidney transplant?  Who’s taking part in a diabetes-related clinical trial?  Exchange knowledge and support with those facing many of the same struggles as you.

A Snapshot of the Type 2 Diabetes Community at PatientsLikeMe

For an in-depth picture of a family affected by diabetes, check out our interview with kidney transplant recipient Michael Burke.


The Five Different Types of Psoriasis

Posted November 1st, 2012 by

A photo shared by one of our members, Lissa, who has plaque psoriasis and guttate psoriasis.  Click to read her story!

On Monday, we recognized World Psoriasis Day on our blog, and today we’d like to dig a little deeper into this lifelong autoimmune condition, which can cause skin lesions on almost any area of the body as well as psoriatic arthritis.

Did you know that there are several types of psoriasis, and that they can have very different presentations?  Here’s a quick primer on the five main forms, none of which are contagious.

Plaque Psoriasis
The most common form involves reddish lesions topped with silvery white scales.

Guttate Psoriasis
A fairly common form marked by dot-like lesions that are small, red and scaly.

Pustular Psoriasis
Involves blister-like lesions and intense scaling, often on the palms and soles.

Inverse Psoriasis
Characterized by very red lesions where the skin folds (e.g. armpits, groin).

Erythrodermic Psoriasis
A rare, painful form marked by red, swollen skin and lots of dead skin shedding.

See photos of each type of psoriasis here.

Advanced Search Options for Finding Psoriasis Patients with the Same Subtype, Condition Status, Number of Years Since Diagnosis and More.

If you’re living with a form of psoriasis, find others like you in our growing community of more than 4,800 psoriasis patients. On our Patients page, you can search by type of psoriasis, years since diagnosis, Dermatology Life Quality Index (DLQI) score and more.We also encourage you to add your subtype(s) on your condition history page so that others like you can reach out and connect.

What treatments work best for your particular type – from light therapy to topical corticosteroids like clobetasol?  Trade notes and exchange support with those who can truly relate today.