Stiff Persons Syndrome

The story of Janet

I am a 44 year old mom of two teenagers and wife to an amazing husband. I live with a disease that affects one in one million people called Stiff Persons Syndrome. I have had the disease for about 11 years, but have only been diagnosed since 2013. I experience severe muscle spasms. These spasms can cause me to fall, have been known to break bones and tear muscles. It is believed that there are less than 350 people in the United States with this disease. There is no cure and the disease is progressive. The leading causes of death for those who suffer from Stiff Persons Syndrome is suicide and respiratory failure. Currently, I am on a daily regimine that includes high doses of Valium and Baclofen. I fall enough to warrant a cane, and it seems like my medicine keeps increasing every six months. My next steps, as the disease progresses will be IVIG therapy.
Living with a rare disease is a challenge. It is hard to find doctors who are familiar with it and is hard to cope. Typically, if I am not spasming, I am sore (recovering from the previous episode). Chronic pain is common for me and those who suffer with Stiff Persons Syndrome.