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  • agate
    replied
    In the previous post, the word "Live" should have been "Lives." Sorry!

    Another person with SPS in the news--this time in the UK. From NHS Blood and Transplant (February 27, 2023)--"Mum with incurable 'one in a million' disease supports need for plasma donors":

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  • agate
    replied
    Interesting article (in Elle, February 25)--"A Look into the Daily Live of Those Living with Stiff-Person Syndrome":

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  • agate
    replied
    And here's another.

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  • agate
    replied
    Another person with SPS in the news--he's going to Seattle to take part in a clinical trial:

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  • agate
    replied
    CÚline Dion's holiday message (I hope this video will work):

    https://www.instagram.com/p/CmjbLH2BpHN/

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  • agate
    replied
    Here's one from MedPage Today (December 12, 2022):

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  • agate
    replied
    There has been a real flurry of interest in SPS now. I could post links to about 20 periodicals that have recent articles about it, but many of them aren't saying anything new. Still there might be some point in showing how one celebrity's diagnosis can trigger such a lot of interest. Sunshine, just let me know if you'd like the links posted.

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  • agate
    replied
    Something about CÚline Dion's SPS (NBC News, December 8):

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  • agate
    replied
    Here's a story involving someone in Australia with SPS--including a photo showing this person's bathroom modifications:

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    (from 9now.com)
    Last edited by agate; 10-04-2022, 04:34 PM.

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  • agate
    replied
    And this story is from Idaho:

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  • agate
    replied
    Another story about someone with SPS, with a link to a GoFundMe page:

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  • agate
    replied
    Every article about someone with SPS is probably valuable because it calls attention to this little-known disorder. This 49-year-old man can't hug his family because even a touch from someone sends his body into a spasm.

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  • agate
    replied
    Another SPS person in the news, though the amount of time that has passed since the dx isn't clear in the article:

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  • agate
    replied
    This young person has stiff-person syndrome and lives with a feeding tube:

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  • agate
    replied
    Another news story about someone with stiff-person syndrome:

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