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What is the life expectancy of someone with Stiff Person Syndrome?
Life expectancy of people with Stiff Person Syndrome and recent progresses and researches in Stiff Person Syndrome
I am in my 22nd year.
I have heard of stem cell therapy, but do not know details.
I have heard of stem cell therapy, but do not know details.
Posted Feb 28, 2017 by Loretta 1000
There doesn't appear to be a quantifiable life expectancy. There are many complications such as falling although if there is someone to help then it is not so bad, but falling somewhere, especially outdoors and alone could be fatal. Choking, which usually begins with liquids, then progresses to food.
Always be aware not to put oneself in a dangerous situation.
Always be aware not to put oneself in a dangerous situation.
Posted Mar 1, 2017 by Liz 1000
The life expectancy of someone with Stiff Person Syndrome is maybe 10 years less than a healthy person.
Stiff Person Syndrome on it's own is not terminal but there is a higher possibility from dying from side effects such as accidental drug overdose and in progressed cases, inability to breath.
Stiff Person Syndrome on it's own is not terminal but there is a higher possibility from dying from side effects such as accidental drug overdose and in progressed cases, inability to breath.
Posted Mar 2, 2017 by Michelle 1500
I read that there is 6-29 years from onset of symptoms for a life span which was done in a clinical trial. There are always improvements but there needs to be more research done. Complications of SPS can be severe and in the end stages it is sad and hard to watch and cope with (my father died in 2010 of SPS and I watched him slowly and it was painful). I am currently doing my own clinical trial with a combination of certain medications and therapies to see if it will help with symptoms.
Posted Mar 4, 2017 by Jasmine Nardone-Franco 1430
I cant wait till this shit just takes my life so ill bever feel this awful pain anymore
Posted Jun 25, 2021 by Lisa 100
My initial diagnosis of atypical Parkinsonism, multiple system atrophy, gave me on average a 5 year life expectancy. SPS, if treated appropriately can have a life expectancy of 20 or more years. Falls and respiratory complications can lead to life threatening issues, so use a cane if you need to, learn how to fall without injury from a physical therapist, and know when to adjust your medications. Make sure to manage your concomitant autoimmune disorder. IVIG or subcutaneous immunoglobulin treatments have helped in my case.
Posted Dec 24, 2021 by Pathdoc 2500
Translated from spanish
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It is very variable. There are accidental deaths caused by lack of knowledge of the disease or by afectacción of the Vagus nerve. No one dares to say anything about it. Keep in mind that the first patients were diagnosed in the year 1956 by Moerchs and Hatmann.
Posted Sep 18, 2017 by Fernando Vela Vallejo 3250
