Hello, my name is Ann Thompson.
I was diagnosed with Stiff Person Syndrome (SPS) at the age of 73 after spending a grueling 15 months searching for answers to my worsening stiffness. I live in Huntsville, AL, and before the onset of my symptoms, I was a retired social worker enjoying an active lifestyle filled with community work, church activities, and regular gym sessions.
Like many of my fellow SPS sufferers, my path to diagnosis wasn't straightforward. After seeing ten different doctors and enduring tests for conditions like MS, I was finally diagnosed through an anti-GAD test I had to advocate strongly for. Even after my diagnosis, I faced the typical SPS patient's struggle—finding a physician willing and able to follow the standard treatment protocol. Today, my treatment includes a cocktail of Baclofen, Diazepam, and IVIG, which has been a great help in managing my symptoms.
SPS changed my life dramatically. I used to be very active—going to the gym 3-4 times a week and actively participating in my community and church. I have minimal mobility these days, needing a walker for short distances and a wheelchair for longer ones.
Amidst all the challenges, I've found joy in my family and the friends who have stood by me. And while I may not be able to partake in my previous activities as fully as I once did, I make it a point to do something physical each day. This could be pedaling my stationary bike, doing laps around my home, or enjoying warm water exercises at the local pool.
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I discovered The Stiff Person Syndrome Research Foundation (SPSRF) through the news media. My hope for the foundation is two-fold: increase awareness about this rare condition so that people exhibiting similar symptoms are not dismissed and drive research for improved treatment options.
I often think about how my story is both typical and atypical of someone with SPS. What's atypical is that my first symptoms did not manifest until I was well into my 70s. But I'm typical in that, like many SPS patients, it took a long journey and numerous doctors before receiving an accurate diagnosis. I want to tell my story, not for sympathy but to remind other SPS patients that you are not alone. To remind you that you must advocate for yourself, seek answers, and not give up until you receive the care you deserve.
We are stronger together and can work towards a better understanding and treatment of SPS.