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.
See MSA’s devastating symptoms firsthand – including losing the ability to speak and swallow solid foods – in this moving YouTube video made by the daughter of a MSA patient. It’s been entered in the 2012 Neuro Film Festival from the American Academy of Neurology, with winners to be announced April 22, 2012.