9

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 life expectancy

Stiff Person Syndrome (SPS) is a rare neurological disorder characterized by muscle stiffness and spasms. The life expectancy of individuals with SPS can vary depending on various factors such as the severity of symptoms, response to treatment, and the presence of other medical conditions. While there is no specific data on life expectancy for SPS, it is generally considered a chronic condition that requires long-term management. Early diagnosis, appropriate medical care, and a multidisciplinary approach involving neurologists and physical therapists can help improve quality of life and potentially extend lifespan. It is important for individuals with SPS to work closely with healthcare professionals to develop a personalized treatment plan.


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.

Diseasemaps
8 answers
I am in my 22nd year.
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.

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.

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 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.

Posted Sep 18, 2017 by Fernando Vela Vallejo 3250

Stiff Person Syndrome life expectancy

Celebrities with Stiff Person Syndrome

Celebrities with Stiff Person Syndrome

3 answers
Is Stiff Person Syndrome hereditary?

Is Stiff Person Syndrome hereditary?

4 answers
Is Stiff Person Syndrome contagious?

Is Stiff Person Syndrome contagious?

4 answers
Natural treatment of Stiff Person Syndrome

Is there any natural treatment for Stiff Person Syndrome?

3 answers
ICD9 and ICD10 codes of Stiff Person Syndrome

ICD10 code of Stiff Person Syndrome and ICD9 code

4 answers
Living with Stiff Person Syndrome

Living with Stiff Person Syndrome. How to live with Stiff Person Syndrome?

8 answers
Stiff Person Syndrome diet

Stiff Person Syndrome diet. Is there a diet which improves the quality of l...

7 answers
History of Stiff Person Syndrome

What is the history of Stiff Person Syndrome?

3 answers

World map of Stiff Person Syndrome

Find people with Stiff Person Syndrome through the map. Connect with them and share experiences. Join the Stiff Person Syndrome community.

Stories of Stiff Person Syndrome

STIFF PERSON SYNDROME STORIES
Stiff Person Syndrome stories
I am a 68 year old male, born in Scotland but live in Sydney Australia who has lived with back problems since 1973, mid 1986 while holidaying in Oregon I went white water rafting on the Rogue River on an inner tube, unfortunately I was thrown off and...
Stiff Person Syndrome stories
I was misdiagnosed with Lupus in 2009 and finally got the correct diagnosis through GAD testing in Oct 2015. My neurologist, who specializes in SPS, Dr. Machado in Conn is the reason I am alive today along with my children and my husband and family. ...
Stiff Person Syndrome stories
Symptoms started very gradually during/after first and only pregnancy in 2004. Full blown symptoms, including stiffness, drooping eyelids and soft palette, vertigo, dizziness, and altered gait by 2008. Diagnosed first with Myasthenia Gravis, and then...
Stiff Person Syndrome stories
2009- infectious mononucleosis 2010 - diffuse toxic goiter 2011- endocrine ophthalmopathy 2013 - diabetes type 1 2013 - thyroidectomy 2014 - c-section 2015 - SPS
Stiff Person Syndrome stories
> My name is Stacy Mayle and I'm 47 years old. I was diagnosed with Stiff Person Syndrome (SPS) 4 years ago, after developing symptoms at age 37. It took 10 years to diagnose since it is such a rare disorder. ...

Tell your story and help others

Tell my story

Stiff Person Syndrome forum

STIFF PERSON SYNDROME FORUM

Ask a question and get answers from other users.

Ask a question

Find your symptoms soulmates

From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

Symptoms soulmates

Add your symptoms and discover your soulmates map

Soulmates map