Hello

[peach50]

Has anyone been diagnosed with a very rare auto-immune neurological disease called SPS or STIFF PERSON SYNDROME?  I was diagnosed with this disease that has no cure in Dec. 2006 and have been driving 204 miles round trip  3 times a week every other week to get plasmapherisis (plasma exchange). This treatment is working to keep my symptoms at bay but I am having a difficult time finding money to pay for the gas and parking. Does anyone have any ideas where I can find some financial help for this disease.

[jr0926]

I don't know where you live exactly, nor am I familiar with your particular disease (though I'm impressed someone was able to diagnose it!), but plasmapheresis isn't a rare thing; it's used for plenty of other disorders, so even though your disease itself is rare, it shouldn't be that hard to find a medical centre willing or able to do it.

Check out other disorders that rely on plasmapheresis via the internet and contact others to see how they manage to get this done close to home. And, while you may dismiss this suggestion entirely, if I had a rare autoimmune condition and my survival depended on a particular treatment, I can tell you that I'd think seriously about moving as close to that treatment as humanly possible (people on transplant lists have to do this all the time). Just some thoughts.

Jr.

[Cindee56]

I'm sorry.  I have never heard of it.  What exactly is this disease?