In observing Rare Disease Day at the end of February, we talked how there are 7,000+ conditions that are categorized as rare diseases due to their lower prevalence (less than 200,000 people in the US). Today we’d like to spotlight one of these lesser-known conditions: multiple system atrophy (MSA), which affects 536 PatientsLikeMe members and approximately 50,000 Americans.
There are no celebrities with MSA, nor is there a high-profile nonprofit organization driving awareness of the disease. Instead, MSA patients have organized themselves through a “Miracles for MSA” Facebook page and determined grassroots efforts. They’ve also designated March as Multiple System Atrophy Awareness Month. Their goal? “We want to reach everyone affected by MSA and have them join us here to make our voices even louder next year. Together, we can make miracles happen for MSA.”
What can you do to help? Learn about MSA and help spread the word. Previously known as Shy-Drager Syndrome, MSA affects middle-aged men and women and advances rapidly with a progressive loss of motor skills. It is very rare for someone to live 15 years with MSA. One of the common symptoms is stiffness, similar to what’s seen in Parkinson’s disease. As a result, MSA is considered a “Parkinson’s plus syndrome,” but it does not typically respond to Parkinson’s treatments.
Did you catch the pre-game show before Sunday’s Super Bowl XLVI? If not, you missed a beautiful NBC piece about Steve Gleason, who spent seven seasons as a safety with the New Orleans Saints.
Diagnosed with ALS a year ago, Gleason now walks with a cane, and his speech has been impacted. The new father remains upbeat, however, and has thrown his energy into ALS advocacy work through Team Gleason. (One recent project: bringing two ALS patients to the Super Bowl to fulfill their lifelong dream.)
Tune in below for the full NBC profile, which includes an interview with Steve, 34, and his wife, Michel:
Steve’s story reminded us of two topics covered on our blog last year. During the NBC piece, Michel states that one of her biggest fears is Steve losing ability to speak. This devastating aspect of ALS recently came up in our interview with ALS blogger Rachael, who discussed how important her eye gaze system (which translates eye movements into words) has been since losing her speech. She says, “It allows me to converse on an almost level footing, conveying thoughts and observations, expressing myself in my own style with all its complexities and idiosyncrasies.”
Finally, Steve is another example of an athlete being diagnosed with ALS, just like baseball player Lou Gehrig, who is indelibly associated with the disease. The NBC piece explores the potential connection between impact sports and neurological diseases. Other researchers, such as Dr. Martin Turner, are investigating a possible link between ALS and athleticism in general. Check out our post “ALS and Athleticism: What Have We Learned?” to hear more about Dr. Turner’s research and how PatientsLikeMe data on ALS handedness (i.e. which hand is dominant) has contributed to it.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.