Did you know that yesterday was Fibromyalgia Awareness Day?
The PatientsLikeMe Fibromyalgia community is growing exponentially with more than 3400+ members just five months after its launch! Many of our members are feeling newly empowered by their membership in our community and are attending events, wearing pins and ribbons and taking the time to spread awareness about what it’s like to live with fibromyalgia.
This sharing mirrors the sharing they do on the site. At PatientsLikeMe, members build their profiles by sharing information about their condition, such as symptoms and treatments. Top treatments cited to date include rest, heating pads, walking, stretching and the drug Lyrica. The most commonly listed symptom is pain, followed by fatigue, memory problems and lower back pain. In addition to sharing health information, patient members also share their personal experiences and tips with each other. In our forum these past few months, patients have discussed all kinds of topics, including finding the right doctor, coping with pain and fatigue and how to explain how they really feel to their friends and family.
With all this sharing, patients are learning more about themselves, helping each other better understand this condition, and improving their overall quality of life. In fact, in a recent survey amongst some of our members with fibromyalgia, 85% of our respondents agreed or strongly agreed with the statement - “I feel better about myself because of the recognition by others at PatientsLikeMe that my condition is real.”
If you are not already sharing and learning with other patients like you, we invite you to join our community here at PatientsLikeMe.
Posted by Lori Piscatelli Scanlon | April 19, 2009
It’s Parkinson’s Awareness Month. As we continue to spread the word about this condition, we wanted to tell you a little bit more about our PatientsLikeMe Parkinson’s community. Launched two years ago this month, the community has steadily grown to include more than 3,400 patients. Below are some interesting facts about the community, as well as an interview with one of our members (”PokieToo”) giving her real-world experience of living with condition.
WHAT’S IT LIKE LIVING WITH PARKINSON’S DISEASE (PD)?
Meet PokieToo. A long-time member of our PD community, she tells us how she continues to “look for the sunshine” while “taking 30 pills a day.” “Out there for the next person,” PokieToo gives us a glimpse of the real-world experiences of living with Parkinson’s disease.
DID YOU ALSO KNOW…
More than 1,500 of our patient members are 50-yrs old or older
140+ of our patient members have inherited Parkinson’s disease (PD), and a handful of people have the less common drug-induced Parkinsonism and Vascular Parkinsonism
Approximately 10% of our patient members (or 331) are Young-Onset Parkinson’s patients; that is, they report having experienced their first symptom before the age of 40.
How are our members treating their condition?
Patients are using more than 1200 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc.
Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Sinemet, Mirapex, Deep Brain Stimulation/DBS and Exercise), symptoms like tremors and depression, as well as other hot issues like SSDI (Social Security Disability Insurance), the annual Parkinson’s Unity Walk, stem cells, clinical trials and research.
PatientsLikeMe is the leading online community for people with life-changing conditions. Patients embrace the open sharing of personal health data because they believe that information can change the course of their disease.
With a focus on patients and research, our blog reflects knowledge resulting from the shared real-world experiences of our community. Welcome to the genesis of patient-led research.
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