Stiff Person in the News Feed

[Sunshine]

I am starting an ongoing thread of any articles that pop up on the internet about Stiff Person Syndrome: either first person accounts or research or....The disease is so very rare, that it would be nice to have a central place to start collecting them. Will also do a retrospective, since I hadn’t saved the articles in a central place, —- therefore, I will find them again and post them here...

This one popped up today— this young girl has SPS and writes well about her fight and her illness:

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This article touches on Paraneoplastic syndrome and mentions Stiff Person Syndrome. There is a subset (about 5%) of people with SPS who have Paraneoplastic syndrome. Treat the cancer and the SPS disappears.

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Nice to see that Stiff Person Syndrome is mentioned as one of the targets of this therapy—- it means, at least to me, that researchers are keeping it in mind—-

BTW—-never ignore info coming from business pages. This is how I learned , 14 years ago , that one of the injectible treatments for MS was given to patients like me (who kept it in their own fridges to self inject weekly)—that there were batches of the drug that were faulty—the pharma company told FDA it wouldn’t harm anyone. Of course, it harmed my heart and lungs. .. this is also how I learned that FDA depends upon the honesty of the pharmas in many instances, such as mine...it was an interesting, to say the least, go around between me, the pharma RN, the Pharma corporattion, an FDA representative, Mayo Clinic, tracking down what had happened.

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[Sunshine]

Curiously, this older study (1998) on Stiff Person syndrome, popped up in my news feed here in 2019 . But, despite its age it is interesting to note some earlier thinking of GAD and glycine receptors

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Just emailed this athlete with SPS
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Not much info, but its nice to see it mentioned in this article:

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This is a new article from AAN meeting on SPS treatments. Very interesting. They talk about a new approach, using a certain cancer drug. Definitely read this and show it to your neuro if you are not a responder to standard approach.

[Sunshine]

There is an informational meeting in Connecticut about SPS, open to patients and families and professionals:
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This study showed that people with GAD65 antibodies had worse SPS symptoms than those with the glycine receptor variety of SPS. People with GAD65 antibodies tended to be more present in females than males.

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This is a case report on treatment of SPS

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Case report of misdiagnosis of Stiff Person Syndrome that was unresponsive to Baclofen and Benzodiazepines

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