Stiff-person Syndrome

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Stiff-person Syndrome
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    How long did it take you to get diagnosed with your rare disease?

    Living with a rare disease can mean years (and maybe even decades) of hospital visits, appointments, treatments, and procedures before receiving a proper diagnosis.

    How long did it take for you to get your rare disease diagnosis? What has that process been like for you?

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
    #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
    #morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

    Post

    I’m new here!

    Hi, my name is angepg. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #stiff-personSyndrome #DemyelinatingNeuropathies

    Post

    I'm new here!

    Hi, my name is lauren_whitehouse. I’m new to The Mighty and look forward to sharing my story. I have other diagnoses, but since I'm a newb, I'm not sure how to add things that weren't ready to be pre-populated. Disability and chronic pain/illness can be isolating at times, so I look forward to connecting with folx and hopefully making some new, mighty friends. :)

    #MightyTogether

    #Anxiety

    #Depression

    #Migraine

    #Fibromyalgia

    #Grief

    #PTSD

    #StiffPersonSyndrome

    #EhlersDanlosSyndrome

    #Arthritis

    Post
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    What frustrates you most about living with a rare disease?

    It's a no-brainer that living with a rare condition can be super challenging and frustrating at that. What about your rare condition do you find most frustrating? What do you wish people understood more about living with a rare disease?

    Let me know in the comments below 💌

    #RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #MightyTogether #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome
    #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome
    #morgellons #Syringomyelia #Neurosarcoidosis #Sarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

    Post

    I'm new here!

    Hi, my name is butterflyrm. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether

    #StiffPersonSyndrome

    #Lupus

    Post

    Hi, I'm Kimberly Lohman Clapp (on air: Suiters). I was a journalist for 25 years, tasked with giving voice to the voiceless. Now I apply that mission to two organizations: one in the rare disease space (The Stiff Person Syndrome Research Foundation) and the other in the addiction space (SAFE Project).

    #MightyTogether