Recognizing Multiple System Atrophy (MSA) Awareness Month

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 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.


7 Comments

  1. Thanks for highlighting Multiple System Atrophy!

  2. Thank you for bring awareness to Multiple System Atrophy and highlighting it. Also for giving a place for MSA patients to find other’s who understand and can bond with each other

  3. Thanks for doing your part during this MSA awareness month. I, being a diagnosed patient, appreciate any effort bringing this disease to the forefront of the conversation on incurable rare diseases.

  4. I,too,want to thank you for recognizing MSA awareness month. Like Tom, I too am a diagnosed patient and appreciate any effort to bring this disease attention. Also, thanks for giving us a place for us to come.

  5. Thank you for having the courage to do your moms video, My mother also has MSA it has been 5 years since her diagnosis and this dwarf disease has very little recognition. You are very courageous with all that you endured during her illness.

  6. I AM SENDING A SPECIAL GREETINGS TO MOMS & GRANDMOMS LIKE ME., WITH MSA & …ARE TYPE 1 DIABETIC LIKE ME M YPOEM IS FULL OF JOY &.,,,,PROMISE…………
    MOTHERS DSY IS JUST FOR YOU……….
    NO BREAKFAS TO PREP NO DISES TO DO…………..
    IF YOU SMLEREAL NICE…………… YOU’LL MAKE THECOOK .. HAPPY……
    LET’S HOPE TODAYS WEATHER IS NICIE NOT THE USUAL CERAPPY…………..
    SO ALLL YOU HUSBANDS,SONS & DAUGHTERS LISTE TO WHAT SAY,,,,,,,,
    OH…………. I ALMOST FORGOT.. YOU GRANDKIDS TOO……WITH OUT……
    THESE LADIES .YOUWOULDN’T BE ………….. HERE…………………..
    NOWI I WANT TO HEAR A GREAT BIG CHEER………………

    HOPE YOU ALL ENJOY………. YOUR …………..DAY MARYGENAB

  7. I have been diagnosed with MSA. I was a construction superintendent who could almost fix anything. Now I can barely hold screwdriver in my hand. I have lost my life as I knew it, I’m losing my house because I can’t work, I’m losing my wife because there is no joy in our lives anymore. I will lose my dignity.

    Somebody tell me how to get rid of the anger and the pain. Emotional pain, I know the physical will never go away.

    I was diagnosed in December of 2015 with Parkinson’s. Two months ago I was rediagnosed by Mayo Clinic with MSA. What’s the point of living if you cant live life. Someone please help!!!!!!

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