2 posts tagged “multiple system atrophy”

Recognizing Multiple System Atrophy (MSA Parkinson)

Posted March 20th, 2012 by

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.

A Snapshot of the MSA Parkinson Community at PatientsLikeMe

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.


“A Mile and a Candle” for World MSA Day

Posted October 3rd, 2011 by

Today, October 3rd, is World MSA Day.

MSA stands for multiple system atrophy, a degenerative neurological disorder that causes symptoms similar to Parkinson’s disease. As a result, it is included in a group of diseases called “Parkinson-plus syndromes,” which have the classical symptoms of Parkinson’s (such as tremor and stiffness) as well as additional physical and mental features. In addition, these diseases typically do not respond to Parkinson’s treatments.

Walk a Mile Today for World MSA Day 2011

The theme for this year’s World MSA Day is “A Mile and a Candle.” All around the globe, MSA activists will be lighting a candle today at 8:00 p.m. local time for one hour. Participants are being asked to light a candle for each person they know who is living with MSA or has been lost to MSA. As candles are lit across every continent, a virtual 24-hour wave of light will be created as it moves from time zone to time zone.

In addition, activists will be walking a mile (or more) in honor of MSA, then reporting their mileage on the “A Mile and a Candle Counter Page.” The goal is to tally enough miles from enough participants to equal 24, 901 miles, which is the circumference of the earth at the equator. If this goal is accomplished, MSA Day supporters will have “walked around the earth” to raise awareness of this little-known disease.

Here at PatientsLikeMe, 485 patients report MSA, with 54% of them female and 46% of them male. The most common age bracket reported is 50-59 years of age, while some of the most commonly reported symptoms include excessive daytime sleepiness, sexual dysfunction, emotional lability and bladder problems. Get to know our MSA patients today and, if you can, light a candle or walk a mile in their honor.