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Hereditary spastic paraplegias (HSP) - Anyone else have this?
Hi Gary @gmoore36, I hope you don't mind. I thought I would respond to your private message by starting a new discussion to help you connect with others like @aleciarickabaugh who also has been diagnosed with hereditary spastic paraplegias (HSP). I didn't see any other discussions on the condition but did find references that might be helpful.
-- Hereditary Spastic Paraplegia - NORD: https://rarediseases.org/rare-diseases/hereditary-spastic-paraplegia/
-- Hereditary Spastic Paraplegia - NIH:
https://www.ninds.nih.gov/health-information/disorders/hereditary-spastic-paraplegia
The National Organization for Rare Disorders (NORD) link above has some helpful patient organizations and resources including the Spastic Paraplegia Foundation - https://sp-foundation.org/.
Anyone want to share your journey with HSP and what has helped you?
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I am still new to the HSP journey but I was encouraged by some neurologists to get in touch with Weill Cornell's Parkinson's center that they would be the best option to seek care or a research opportunity if that is of interest.
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3 ReactionsI was “diagnosed”with HSP by a neurologist several years ago. He said it could only be confirmed by expensive genetic testing, which didn’t matter because there was no treatment or cure. He advised me to save my money for an electric wheelchair. Later I had the tests. No HSP, and no clue as to what it might be. My mobility and overall condition have greatly declined to the point that I’m learning to use the wheelchair now, five years later.
I agree with John and Alecia, check out the rare disease sites and continue to search for anything helpful. Best wishes for your success—the cure is surely out there!
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