19 posts from June, 2011

Being an Advocate for ALS

Posted June 7th, 2011 by

Last month, we had the opportunity to interview PatientsLikeMe member t1961, who attended ALS Advocacy Day, held May 8-10, 2011, in Washington, DC. What does it mean to advocate for your disease on Capitol Hill? How can you personally make a difference? Check out the interview below to learn why this ALS patient felt the need to get involved and “put a face on this monster.”

ALS Advocacy Day

1.  What is ALS Advocacy Day?

ALS Advocacy Day was a national conference with ALSA Chapters of the USA and with patients with ALS (PALS) and their families and caregivers (CALS). We met in Washington, DC, where they held several information sessions on topics from Medicare to Familial ALS (FALS) to Congress 101. Each PALS and CALS with their local ALSA Chapter met with their home state Congressmen and Congresswomen. The purpose was to ask for more funding for the National ALS Registry and the ALS Research Program (ALSRP) though the Department of Defense.

2.  Why did you decide to take part?

My voice is for all the other PALS, whose worlds’ have been turned upside down by ALS. Personally, I want a treatment and cure. I don’t want other young grandmothers not to be able to hold their grandbabies, like me. Or to be able to play Simon Says or Duck, Duck, Goose. I went to tell my story, the heartache, the pain this disease has cost my husband, daughters and grandchildren. To put a face to this monster!

3. We heard you met up with several other members of PatientsLikeMe at this event. What was that like?

Yes, I got to meet some PatientsLikeMe members, and it was wonderful. PatientsLikeMe is an extended family. We are all from all over the world, but we became brothers and sisters to each other. We understand what each others’ daily lives are like. We laugh, cry and mourn together. I know if I have a question, I’ll get an answer, and we have become very creative with how to do normal daily things.

4. You’re both active offline and online at PatientsLikeMe. How has PatientsLikeMe helped you with your ALS?

First of all, every new PALS I meet at MDA clinical checkups or support group meetings, I ask if they are on the PatientsLikeMe website. If not, I give them the site’s address and explain that it’s something that they need to get on. PatientsLikeMe knows more than the doctors, who slowly watch and take notes on us slowly weakening and dying. PatientsLikeMe PALS/CALS can tell you what medicines work best, what is the best power wheelchair for your lifestyle, how to remodel your bathroom, what it the best kind of handicap van and where to locate them. The list can go forever.

5. What are some of the things you would want to tell a newly diagnosed patient about ALS?

Enjoy your family and friends. Take it one day at a time. Get your affairs in order. It’s okay to cry and mourn for the things that you won’t to be able to do in the future but keep living now. And talk about ALS and its effects on you and your family. Educate the people around you about Lou Gehrig’s disease. Remember: research+ education = treatment. Funding + research + treatment = CURE!

6. What is something few people know about ALS ?

It’s not a painless disease. It knows no gender, age, race.

PatientsLikeMe member jdevita

Coping with Nerve Sensitivity

Posted June 4th, 2011 by

Do you suffer from nerve sensitivity – or a feeling akin to pins and needles?  Known clinically as paresthesia, this uncomfortable sensation if often described as a tingling, pricking and/or creeping feeling.  For some people with nerve sensitivity, it can be painful for clothing to touch your skin.  Although there is no objective causes, nerve sensitivity is usually associated with injury or irritation of a sensory nerve or nerve root.

At PatientsLikeMe, where more than 130,000 patients are sharing their experiences with all types of treatments including prescription drugs, over-the-counter drugs and supplements, 36 patients current report experiencing nerve sensitivity.  Their primary health conditions range from multiple sclerosis (MS) to fibromyalgia to complex regional pain syndrome type 1.  What can we learn from their experience?  Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform.

For example, this symptom has a major impact on daily life, as more than two thirds rate their nerve sensitivity as severe (12 patients) or moderate (18 patients).  What are they doing to cope?  Some of the commonly reported treatments for nerve sensitivity include Potassium, Gabapentin, Neurontin and Zonisamide.  (Click on each treatment name to see how our patients rate the effectiveness, side effects, cost and more.)


Are you living with nerve sensitivity?  Don’t go it alone.  Join PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

Join PatientsLikeMe

One for All: The Opportunity to Make Patients’ Lives Better

Posted June 3rd, 2011 by

“Patients are giving us their data, and we need to honor that by doing something that advances their disease, their cause, their power in the world.” – Jamie Heywood

This week marks the fourth and final installment of our latest video series, which explores what the recent changes at PatientsLikeMe mean for you as well as the entire medical establishment. (Missed the first three interviews? Catch up on what PatientsLikeMe executives Ben Heywood, David S. Williams III and Paul Wicks had to say.)

In today’s video, PatientsLikeMe Co-Founder and Chairman Jamie Heywood talks about the next steps in realizing the goal of PatientsLikeMe: to help all patients determine how they can affect their health outcomes and live the longest, most productive lives possible. What will it take to do that? Tune in to hear his vision of how healthcare could evolve as quickly as technology, provided that the concept of shared data is fully embraced.

To keep up with all PatientsLikeMe videos, subscribe to our YouTube channel today.

PatientsLikeMe “Express Yourself” Video Contest: Voting Ends Tomorrow!

Posted June 2nd, 2011 by

PatientsLikeMe "Express Yourself" Video Contest ContestantsHave you voted yet?

Tomorrow, June 3, is the last day for you to decide the winner of the first-ever PatientsLikeMe “Express Yourself” Video Contest. We asked, “How has PatientsLikeMe changed your life?” to our members, and they have responded with creative and amazing videos that the entire world can now see.

Five winners will be chosen for this contest, and your votes decide three of them!  After you chose the top three favorite videos (based on the number of votes), our judges will determine the final two winners in the “Most Creative Presentation” and “Most Inspiring Story” categories. Each winner will receive an American Express gift card ranging from $150 – $500. Anyone and everyone can vote, including non-members, so please spread the word to others who might enjoy these videos.

With tomorrow being the final day of voting, we will be spotlighting the submitted videos on Facebook and Twitter, so be sure to stay tuned for one last glimpse. Again, we want to thank all of our contestants for their hard work. Who’s ahead in the votes? Check out the current leaderboard below. And if you haven’t already, vote now!

Current Number of Votes on the Leaderboard

PatientsLikeMe member afleishman

30 Years of AIDS

Posted June 1st, 2011 by

The Federal Government and 30 Years of AIDS

On June 5, 1981, the Centers for Disease Control’s Morbidity and Mortality Weekly Report (MMWR) described the first reported cases of AIDS in the US.  Thirty years later, AIDS.gov is observing this date with a campaign called “The Federal Government and 30 Years of AIDS.”

What have we learned about Human Immunodefiency Virus (HIV) and Acquired Immunodeficiency Syndrome (AIDS) in the last three decades? And how well are we doing as a country with HIV/AIDS education, screening, treatment and research?  Hear answers from the country’s top experts during a live webcast today, June 1, at 3:00 p.m. EDT.

Sponsored by AIDS.gov (who has a guest profile at PatientsLikeMe) and the White House, this live video chat features Surgeon General Dr. Regina Benjamin, Director of the White House Office of National AIDS Policy Jeffrey Crowley, and Director of the Division of AIDS at the National Institute of Allergy and Infectious Diseases, NIH, Dr. Carl Dieffenbach. To join in, submit questions in advance, watch live at WhiteHouse.gov/live and submit live questions during the discussion on Facebook.

Here at PatientsLikeMe, we have 2,948 members who report living with HIV. Beyond what they share on their individual patient profiles about their symptoms, treatments and quality of life, they also offer their perspectives in our forum, where common topics include the psychological aspects of being HIV+ and how to approach dating post-diagnosis. What can you learn from other patients? One example is what to expect. More than 290 of our members have been diagnosed with HIV for 20 years or more, showing that living with HIV long-term is now possible.

Check out the video below featuring a member who’s lived with HIV for 25+ years.  Now with more than 35,000+ views on YouTube, this candid interview reveals how HIV awareness has evolved and how helpful it is for long-term survivors to be able to connect with others like them.

Finally, there’s a key takeaway from “30 Years of AIDS” that impacts us all: the importance of getting tested now that HIV tests (some with results in as short as 20 minutes) are readily available. According to the Centers for Disease Control, of the estimated one million people living with HIV in the US, one in five (21%) are unaware of their infection. Have you been tested recently? If not, June 27, 2011, is National HIV Testing Day. Use this handy locator to find a screening facility near you.

If you’re older than 30, AIDS came about in your lifetime. If you’re younger than 30, you’ve only known a world with AIDS. What has that meant for you – and for your generation? Share your thoughts in the comments section.