What to Know About Celine Dion’s Disease, Stiff Person Syndrome

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Have you heard of Celine Dion’s recent diagnosis? Ever since she was diagnosed, there has been a lot of talk about stiff person syndrome, or SPS. This rare disease is not very common, but it is not necessarily new.

Still, not a lot is known about what causes stiff person syndrome or how to treat it. Much more research needs to be done to make greater strides in treating or possibly even curing this disease. There is currently no cure, but there are treatment methods.

Wondering exactly what stiff person syndrome is, as well as its symptoms, what to look out for, and the treatment routes available to patients? Read on for everything you need to know about Celine Dion’s disease, stiff person syndrome. Whether or not you are a fan of Celine Dion, you will want to know about this rare disease so you can be well informed.

What is stiff person syndrome?

Most people had never heard of stiff person syndrome until Celine Dion was diagnosed. Sometimes it takes a famous person to put a disease in the spotlight before it starts getting the attention it deserves.

According to the National Institutes of Health, “Stiff-person syndrome (SPS) is a rare, progressive neurological disorder.” Symptoms of this disease may include stiff muscles in the trunk or torso as well as the arms and legs, plus greater sensitivity to noise, touch, and emotional distress. All of these things can set off muscle spasms, which is uncomfortable for those who suffer from this disease.

Did you know that twice as many women as men are affected by stiff person syndrome? In addition, people who have stiff person syndrome may develop abnormal posture over time. This usually looks like a hunched over posture. In severe cases, a person with stiff person syndrome could become so disabled that they are no longer able to walk or move. This may lead to them falling frequently because their normal reflexes are not functioning properly.

Obviously, this can lead to serious injury and may become debilitating because the person may grow afraid to leave the house or be triggered by loud noises that may induce a spasm or fall.

Though stiff person syndrome is rare, those who suffer from it know all about its discomfort. However, the good news is that the more it is talked about, the more research will be done and hopefully a cure will be discovered. Celine Dion’s diagnosis is sad for her and her fans, but her prominent position in the world may help to shed more light on this disease.

In the meantime, there are efforts that can be made to alleviate symptoms and achieve the best quality of life possible.

How to treat stiff person syndrome

Unfortunately, there’s still a lot to be discovered about stiff person syndrome. Scientists do not yet understand what causes this rare disease, but the research we do have indicates that it may be the result of an autoimmune response gone wrong in the brain and spinal cord.

So what can you do to treat it?

The National Institutes of Health explains, “Several symptoms improve with oral diazepam (an anti-anxiety and muscle relaxant drug) or with drugs that alleviate muscle spasms, such as baclofen or gabapentin. A study funded by the National Institute of Neurological Disorders and Stroke showed that intravenous immunoglobulin (IVIg) treatment is effective in reducing stiffness, sensitivity to noise, touch, and stress and for improving gait and balance for people with SPS. IVIg contains immunoglobulins (natural antibodies produced by the immune system) derived from thousands of healthy donors.”

Current research shows that the group of medications called anxiolytics seems to help improve some of the symptoms of stiff person syndrome. It’s also important to note that the disease is frequently associated with other autoimmune diseases such as type-I diabetes, thyroiditis, vitiligo, and pernicious anemia. Thus, diabetic medications and products and drugs for thyroid disorders may be able to help relieve symptoms of this rare disease.

Cleveland Clinic shares more:

“Medications that can help decrease stiffness, rigidity and painful muscle spasms include:

* Benzodiazepines: Benzodiazepines are a class of drugs that treat a variety of conditions, such as anxiety, seizures and insomnia. They affect GABA signals. Healthcare providers often prescribe diazepam as a first-line treatment for SPS.

* Muscle relaxants: Baclofen can help treat muscle spasms. It works by relaxing your muscles, which reduces muscle stiffness.

* Neuropathic pain medications: Medications like gabapentin and pregabalin also affect GABA signals and can help with SPS symptoms.”

While there is no known cure for stiff person syndrome yet, the symptoms of this disease may be kept under control with the appropriate treatment routes. If you have stiff person syndrome, you may need a team around you to help you secure the best possible quality of life.

The health care team around a person suffering from stiff person syndrome may include neurologists and neuro immunologists; occupational and physical therapists; physical medicine and rehabilitation specialists, speech therapists; and mental health specialists, such as psychologists.

Signs that you may have stiff person syndrome

Because stiff person syndrome is pretty rare, it can be hard to diagnose. In addition, it is often misdiagnosed because it has similarities with other, more common diseases.

The National Institutes of Health says that it is often “misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia.” However, there is a way to get a definitive diagnosis. By taking a blood test that measures the level of glutamic acid decarboxylase (or GAD) antibodies, doctors can determine once and for all whether a patient is suffering from stiff person syndrome or not.

That’s because “most people with SPS have elevated (higher) levels of GAD antibodies,” according to the National Institutes of Health. Currently, the research around stiff person syndrome is focused on understanding not only the cause of the disease but also the role of the anti-GAD antibodies. If you have the symptoms of stiff person syndrome as well as an elevated level of GAD antibodies, this could be a sign that you may have the disease yourself.

Of course, the appropriate course of action is to discuss your symptoms and experience with your doctor in order to determine the best potential route forward for your individual situation.

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