Stiff Person Syndrome

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

Stiff person syndrome (SPS) is a rare autoimmune neurological disorder that affects the nervous system and causes muscle stiffness and spasms. It can have various causes, such as diabetes, cancer, infections, or antibodies against certain brain proteins. SPS can affect different parts of the body, such as the legs, back, abdomen, chest, arms, neck, and face.

The life expectancy of someone with SPS depends on the severity and frequency of the symptoms and complications. SPS itself is not life-threatening, but it can lead to serious problems such as:

Falls and injuries due to sudden spasms or unsteadiness

Chronic pain due to muscle contractions and spasms

Spinal cord compression due to changes in the spine alignment caused by muscle tightness

Diabetes complications due to fluctuations in blood sugar levels caused by delayed gastric emptying

Cancer complications if SPS occurs as a result of tumors in the brain or spinal cord

These complications can be life-threatening if not treated promptly and properly. Therefore, it is important to seek medical attention if you have symptoms of SPS and follow your doctor’s advice on how to manage your condition.

There is no cure for SPS, but there are treatments that can help reduce or control the symptoms. These include:

Medications that suppress the immune system (immunosuppressants), relax the muscles (muscle relaxants), or control seizures (anticonvulsants)

Intravenous immunoglobulin (IVIG) that provides antibodies from donated blood to block the harmful antibodies that cause SPS

Plasmapheresis that removes the harmful antibodies from the blood by filtering it through a machine

Dietary changes that involve eating smaller, more frequent meals that are low in fiber and fat and easier to digest

Physical therapy that involves exercises and stretches to improve muscle strength and flexibility

Pain management that involves medications, injections, or alternative therapies to relieve pain

Surgery that involves removing tumors or implanting a device that stimulates the spinal cord (spinal cord stimulator) to reduce spasms and pain

The effectiveness of these treatments may vary from person to person and may have side effects or risks. Therefore, it is important to discuss with your doctor the best option for your case.

SPS is a chronic condition that can affect your quality of life and increase your risk of serious complications. However, with proper diagnosis, treatment, and self-care, you can live with SPS and reduce its impact on your health and well-being.

by Diseasemaps

I am in my 22nd year. I have heard of stem cell therapy, but do not know details.

2/28/17 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.

3/1/17 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.

3/2/17 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.

3/4/17 by Jasmine Nardone-Franco 1430

I cant wait till this shit just takes my life so ill bever feel this awful pain anymore

6/25/21 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.

12/24/21 by Pathdoc 2500

Translated from spanish Improve translation

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.

9/18/17 by Fernando Vela Vallejo. Translated

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