Updated posted by Sophia Kassem 3 days ago
Laura’s birthday is tomorrow! Let’s make sure...
Updated posted by Sophia Kassem 8 days ago
Happy Rare Disease Day! Please remember to keep...
Created by Sophia Kassem on November 8, 2013
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Hi Laura. My name is Ron. I am 37 years old. 7 years ago I too was diagnosed with SPS. And like the other SPS victims doctors misdiagnosed me. They told me I was depressed or suffering from anxiety. One doctor called me a liar and threw me out of his office after explaining my symptoms. I receive IVIG every month at home. I also have the oral medications. The IVIG has helped enough to get me walking on my own and able to have some normalcy and quality of life. But it didn't happen over night. Without the infusions I probably would be back to the being stiff and feeling like someone was stabbing me 24 hours a day. I would like to be able to talk to you and maybe support each other through this. I was very excited to read that others are doing better after the procedure in Canada. I would like to learn more about it as well. This may be something for me to consider. Maybe we can find the others to help bring more awareness. More publicity could possibly lead to raising funds for treatment or possibly getting free treatment. I was able to get some free treatment at the University of Penn in Philadelphia in exchange for me allowing resident neurologists run tests and study me. Please contact me if you are interested in talking about this. Maybe we can help make a difference. Sincerely, Ron Svitak
posted by Ron Svitak 26 days ago
Thanks to all who donated. I don't know you all but I am grateful. And Judy, that is exactly how I was able to get diagnosed. I went to over 29 doctors and hospitals within a 2 year period and all they came up with was the hypothyroidism, idiopathic neuropathy, and near syncope. It wasn't until May 2009, after watching 20/20 that I knew what was really wrong with me, but I had to wait until July 2009 to see a new neurologist to order the correct blood test to diagnose me. Who knew this test cost over $3000, but we were finally on the right path and I started to feel better with the new treatment, but that only lasted so long as this condition is progressive. I believe there are those who are misdiagnosed too with such things as MS or myasthenia gravis because this condition is unknown and therefore underdiagnosed.
posted by Laura K 2 months ago
I cannot donate much but will add my prayers with the money. My niece is one of the rare cases of a person with this syndrome. She went through hell before being correctly diagnosed and still goes through so much. It was only after she and her mother saw a tv special about someone with this syndrome that they were able to connect the dots to my nieces' symptoms and request the neurologist do the test. Perhaps this illness is even more widespread than is believed because of all the misdiagnosed cases. Hypothyroidism seems to be a catalyst for the disease as well. It is very prevalent in our family, myself included as are four of my five children. More needs to be researched on this auto-immune condition and the ramifications.
posted by Judy Scholler 2 months ago
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