A Look Into The Daily Life Of Those Living With Stiff Person Syndrome

From the bed to the living room and back again — the only places you’ll go all day, every day. This is the life of someone suffering from Stiff Person Syndrome. Difficulty standing, showering, or even cooking — not to mention the ever-looming fear of a muscle spasm that can harden you like a statue at a moment’s notice.

What Is Stiff Person Syndrome?

Medically categorised as a neuro-autoimmune disorder, Stiff Person Syndrome or SPS causes those diagnosed to have stiff muscles in the arms, torso, and legs. According to the National Institute of Health, it can even cause “greater sensitivity to noise, touch, and emotional distress, which can set off muscle spasms.”

What Causes Stiff-Person Syndrome?

While the cause of SPS is unknown, its symptoms are said to be “caused by deterioration of the parts of the nervous system that restrain our muscles. This loss of restraint leads to overexcited, hyperactive muscles. Unfortunately, we don’t know why most autoimmune diseases develop, but genetics and environmental factors both likely play a role. This decreased inhibition results from the disruption of some central nervous system pathways that inhibit muscle contraction. Some abnormal antibodies may impact the altered neuronal excitability.

The action of the abnormal antibodies is only partially understood. It is not known why these abnormal antibodies are produced. The normal immune system makes antibodies which recognise and help destroy foreign bodies. Although people make billions of antibodies, in SPS, a few antibody types are abnormal, Dr. Basil Kahwash, a Board-Certified Immunologist at Vanderbilt University in Nashville, Tennessee, has revealed.

Because it is an autoimmune disease, antibodies are directed toward a person’s tissues resulting in the body attacking itself. This disorder includes abnormal neuronal (nerve cells) function and abnormal antibodies, it is considered a neuroautoimmune disorder. It may take up to seven years to determine an adult has SPS, and more often than not, it is misdiagnosed as MS, Parkinson’s, or a psychological disorder.

Is It Treatable?

While there are treatments, there is no cure. While treatment primarily focuses on relief from symptoms, it is often not enough. People with SPS have very different responses to treatments, so the patients and their physicians carefully try and evaluate medications.

It is impossible to predict which drugs will be effective for an individual; however, some experts report that the types of SPS antibodies in a person might influence which immunotherapies are most likely to be effective. There is currently no cure for SPS. Medications and other treatments may help reduce some individuals’ stiffness, muscle spasms, and pain. Unfortunately, most patients with SPS still have at least some degree of disability.

What Is It Like Living With SPS?

Tara Zier, a young lady who suffers from SPS explains that it has affected every aspect of her daily life. “I now deal with fatigue, muscle rigidity, and pain on a daily basis. My sleep is compromised. My back muscles feel like they are in a vice. I have to plan everything down to when I’m going to shower due to limited energy. I endure physical therapy three days a week. It’s difficult and adds to the fatigue and pain. But it’s worth it because I’m getting stronger. For me, this illness is invisible, which has its unique set of challenges.”

For Zier, people assume she feels fine because of her outward appearance, but battling the debilitating symptoms can sometimes feel like a performance.

“Everyone’s experience with this condition is different,” tells Zier. It is a spectrum that ranges in severity. “Some have muscle spasms so severe they break bones, dislocate joints, and result in life-threatening breathing problems. Most have problems with mobility and require assistance like walkers and wheelchairs. Some people are bedridden.” A major challenge with SPS is serious injury from a startling or unexpected body spasm. Those with SPS can fear going outside or become uncomfortable with it, and this can lead to isolation, depression, and anxiety — an unfortunate side effect of medication and treatment.

Copied from ‘The Stiff Person Syndrome Research Foundation  NewsLetter