Rare Diseases

Live Better Together in 2013

Last year, over 170,00 patients learned from each other’s shared experiences every day on PatientsLikeMe. In 2013, we promise to continue putting the patient first. We’ll provide better, more effective ways for sharing real-world health experiences that help you, other patients like you, and organizations that focus on your conditions. You’ll hear us talk more than ever this year about living better, together. What does that mean to you? As we kick off 2013, just know this…what inspires us most to live better, together is YOU. From everyone at PatientsLikeMe, Happy New Year!

A Patient Poem for the Modern Age

Can you be friends with someone you’ve never met in person? The members of our online health community – now 300, 000+ patients strong – think so.  In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone. As evidence, here is a touching poem written by a newer PatientsLikeMe member.  Although he wishes to remain anonymous, he says that he wrote the poem to “uplift people who feel like no one understands them.” Dedicated to Internet Friends It’s strange to have a friend that you have never hugged, lightly touched their arm, or looked into their eyes. But you have touched their soul felt their heart been embraced by their warmth of being. A friend unseen is not a friend untouched. The eyes of the soul will gaze, the heart will embrace the image will stand tall but only in a dream. Want to connect with those who can truly relate?  No matter what health condition you have – from multiple sclerosis to fibromyalgia to Parkinson’s disease – find others like you at PatientsLikeMe.

Not Recognizing the “New Me”

For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself.  According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help. Have you found yourself feeling resentful when family, friends or strangers try to assist with something? Have you resisted using a complimentary wheelchair (e.g., at the airport or on cruise ship) out of embarrassment? Have you worried that becoming someone who receives help is going to change your lifelong identity? If you answered “yes” to any of these questions, you are far from alone.  Many PatientsLikeMe members report that learning to accept help gracefully is one of the most challenging aspects of chronic illness.  And it’s not just allowing the help itself, per se, but seeing yourself in a new light, as one member puts it.  It’s not unusual to take great pride in being a superman or superwoman, the type of handy, resourceful person who does it all and is always helping others in the family or community.  This can be part of your self-image, as well as a source of self-esteem. …

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Honoring Family Caregivers Everywhere

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, 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 …

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What’s Positive About Disease?

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 …

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Searching for a Diagnosis: An Interview with 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 …

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What We’re Reading at PatientsLikeMe

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. 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 …

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A Day in the Life of PatientsLikeMe Web Developer Adam Darowski

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features PatientsLikeMe employees from different departments.  Today we’d like to introduce you to Adam Darowski, a father of three who joined the technology team as a web developer exactly three years ago.  Find out why he had a crush on the company long before he came to work here and more in our interview. 1.  What led you to join PatientsLikeMe in 2009? I had been a big fan of PatientsLikeMe since late 2006 when I originally met Co-Founders Ben Heywood and Jeff Cole. Over time, it became more and more clear to me that my next position would be with PatientsLikeMe. First the company hired Kate Brigham (who I had known for quite a while), then I met people like Cris Necochea and Rich Thornett. I knew it was a special place with special people. What ultimately led me here in 2009 was the opportunity to do some things that were very important to me. I want to make PatientsLikeMe an incredible resource not just for patients living chronic conditions, but also for parent caregivers …

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PatientsLikeMe Featured on Bloomberg TV

On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as company.  Filmed partially in our office in Cambridge, Massachusetts, the piece features PatientsLikeMe Co-Founder and Chairman Jamie Heywood as well as Ed Sikov, a PatientsLikeMe member with Parkinson’s disease.  Our thanks go to Bloomberg’s Nicole Lapin for her in-depth coverage of our evolution into a data-sharing platform that, as she puts it, “functions more like a clinical trial.” Visit our Press page for other recent PatientsLikeMe media highlights. Watch the Bloomberg TV profile below:

Recognizing the Rare Disease Community’s Champions of Hope

Did you know that 1 in 10 people worldwide have rare and genetic conditions? PatientsLikeMe was a proud sponsor of the 1st Annual Tribute to Champions of Hope, organized by our partner the Global Genes / RARE Project. Held on September 27th in Newport Beach, CA, the gala recognized outstanding individuals who are working to affect change in the rare and genetic disease community.  All proceeds from the event – which attracted celebrities, medical researchers, pharmaceutical executives and even Olympic champions – go to benefit programs for patients and advocates. In attendance from PatientsLikeMe were Ben Heywood, Arianne Graham and Deborah Volpe, who got to hear inspirational stories of the work these champions of hope are doing.  Highlights included the Biotechnology Award given to Charles Dunlop of Ambry Genetics and the Mauli Ola Foundation, which organizes therapeutic surf experiences for kids with cystic fibrosis, and a preview of the documentary Here. Us. Now., which chronicles a family with twin daughters diagnosed with Niemann-Pick Type C, a rare, incurable and fatal genetic disease.  Lifetime Achievement Award recipient Henri Termeer, the former President and CEO of Genyzme, aptly summed up all those who received awards as “people that have a sense that if …

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