Sylvania woman battles rare 'Stiff Person Syndrome'
Mon, 16 Dec 2013 01:08:44 GMT —
A Sylvania woman is fighting to overcome a rare disease that has left her a prisoner in her own body.
33-year-old Laura Kassem has been bedridden for the past month, enduring painful spasms that have left her unable to work, or use a regular bathroom. She suffers from Stiff Person Syndrome, a disease that affects only one in a million people.
Kassemâ??s condition has deteriorated since fall 2007, when she first experienced an outbreak of hives. Feelings of fatigue and other physical issues soon began to arise. While walking around Houston in December 2007, Kassemâ??s body suddenly went stiff, sending her tumbling to the ground.
After returning to Ohio, the falls continued, and Kassem visited doctors in several fields. Medical professionals failed to accurately diagnose her with Stiff Person Syndrome, due to its rarity and similarity to symptoms of many other diseases. It took almost four years before a neurologist diagnosed her with Stiff Person Syndrome.
Spasms can be triggered by light, sound, touch and physical or emotional stress. They are often accompanied by shortness of breath and involuntary extension of the legs. Kassem said her struggle is compounded because few people, including medical professionals, have ever heard of the disease.
Her life is now mostly relegated to the couch in her parentâ??s Sylvania home. She has trouble standing, sleeping, and deals with pelvic pain from the violent spasms. A regimen of about 20 pills per day helps stave off the symptoms, but it is no cure.
Kassem said she has found a glimmer of hope in a stem cell transplant procedure that has allegedly cured others with Stiff Person Syndrome. She said only two hospitals in the United States offer the procedure, although it would not be covered by insurance. The out-of-pocket cost to Kassem would exceed $200,000.
Lauraâ??s sister, Sophia Kassem, started an online donations account last month to help fund the stem cell transplant. Donations have already exceeded $3,000, an amount that will pave only a small part of Lauraâ??s road to recovery.