15 posts from February, 2011

Rare Disease Day 2011: “Rare, But Equal”

Posted February 28th, 2011 by

RDD_whiteFor patients with prevalent diseases, it may be easy to find others with your condition.  You meet them at clinics; you run into them when seeing your specialist; or you participate in one of the support groups in your area.  For those with rare diseases, the simple act of finding another patient like you isn’t always as easy.  You might be the only patient your doctor has seen with your condition.  Finding another patient often becomes a goal and sharing and learning from them a welcomed reward.

Alongside NORD and EURORDIS, we are celebrating Rare Disease Day and they’ve deemed this year’s theme “Rare, but Equal.”  At PatientsLikeMe, patients are patients, no matter what their condition.  Patients with rare diseases are sharing their health information alongside patients with more widespread conditions.

So, who do we have sharing information about their rare disease?  To date, more than 455 patients with Multiple System Atrophy and 122 patients with Progressive Supranuclear Palsy, both neurodegenerative disorders that mimic Parkinson’s disease, have joined our community.  Do you have Neuromyelitis Optica, the autoimmune inflammatory disorder affecting the spinal cord, optic nerve, that has lesions often misdiagnosed as multiple sclerosis?  There are 332 patients just like you.  Sharing right alongside these patients you’ll find 388 patients with Progressive Muscular Atrophy (a rare subtype of ALS which only affects the lower motor neurons) and 331 with Primary Lateral Sclerosis (a subtype of ALS which affects the upper motor neurons).

Many of you also know that we actually started PatientsLikeMe focused on the rare neurodegenerative disease, ALS.  Six years later, there are now more than 4,000 ALS patients-plus almost 20% of the newly diagnosed in the U.S. every month-sharing their journeys and learning from one another.  (You can read about highlighted milestones in our 2010 ALS Awareness Month blog.)  In 2011, we’ll continue our heritage of serving those with rare diseases by improving this overall experience of finding a “patient like me.”

There are no major awareness raising pink ribbons or yellow wristbands for these rare diseases.  But, there is a group of patients who have found each other, who are sharing with one another and the world their disease experience.  And, that will translate to accelerated research and better outcomes – two things we are hoping to make a little less rare.

PatientsLikeMe member mcotter


What Does It Mean When You Have Cold Legs?

Posted February 27th, 2011 by

Do you wonder if your cold legs could be a sign of something?  Sensations of coldness in the extremities – such as the feet and toes – may be the result of poor circulation, neurological disorders or temperature dysregulation.

At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, approximately 137 patients report cold legs below the knee.  The majority rate this symptom as either “moderate” (42%) or “severe” (31%).   Interestingly, many of these patients list their primary condition as ALS (Lou Gehrig’s disease) or multiple sclerosis (MS), showing that this disconcerting symptom is common in these two neurological diseases (both of which can impair mobility).

Two treatments that our patients report for cold legs are a powered wheelchair and a handicap/disabled parking permit.  What have you tried?  If you’ve experienced cold legs yourself, we encourage you to share your experiences to help other patients.  PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions and lifestyle modifications that have helped you or simply had no effect.

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Got something you’d like to tell others who are experiencing cold legsJoin PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange support and advice, research common treatments and learn from other patients like you.

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