Stiff-person Syndrome

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Stiff-person Syndrome
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  • About Stiff-person Syndrome
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    Nina
    Mighty Leader
     • 
    @sparklywartanks
    Living With Rare Disease Last Week
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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

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    angepg
     • 
    @angepg
    March 17, 2022

    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

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    Story
    David and his wife.
    David and his wife.
    David Napier
     • 
    Stiff-person Syndrome
    March 16, 2022

    Climbing the Mountain of Life With Stiff Person Syndrome

    David and his wife.
    NewThe mountain is still there, and I am still climbing. But this climb has been made easier by my amazing brilliant empathetic professor of neurology, and my amazing 24/7 caregiver and wife. And now I finally have a diagnosis, stiff person syndrome, along with bradykinesia — both progressive and incurable. I have epileptic seizures that [...]
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    LoLo
     • 
    @lauren_whitehouse
    March 7, 2022

    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

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    Nina
    Mighty Leader
     • 
    @sparklywartanks
    Living With Rare Disease February 23, 2022
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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

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    butterflyrm
     • 
    @butterflyrm
    February 21, 2022

    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

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    Story
    Meg wearing a stiff person awareness t-shirt and sitting in her wheelchair.
    Meg wearing a stiff person awareness t-shirt and sitting in her wheelchair.
    Meghan Bayer
     • 
    Stiff-person Syndrome
    January 18, 2022

    The Myths I Want to Bust as a Young Adult With a Feeding Tube

    Meg wearing a stiff person awareness t-shirt and sitting in her wheelchair.
    “Yes, my backpack contains the charger to my body!” Oh, sorry! Was that awkward? I tend to do that. As a feeding tube dependent individual, I have my share of funny, messy, and occasionally mortifying moments. I have “fed the bed” so many times, as many people with feeding tubes do at some point. Nothing [...]
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    Story
    Illustration of woman flexing muscles in front of large superhero shadow on pink background
    Illustration of woman flexing muscles in front of large superhero shadow on pink background
    Meghan Bayer
     • 
    Stiff-person Syndrome
    November 26, 2021

    Hacks for Living Your Best Life With a Feeding Tube

    Illustration of woman flexing muscles in front of large superhero shadow on pink background
    My name is Meghan; also known as the Megalodon. I’m your not-so-typical 25-year-old and I enjoy competing in taekwondo, fishing, camping and adaptive snow skiing. I’m an avid outdoorsman, a third degree black belt in training for my fourth degree and a nine time ATA Martial Arts World Champion. I’m a college graduate working on [...]
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    Story
    Meghan Bayer
     • 
    Stiff-person Syndrome
    November 17, 2021

    My Journey to Finding the Right Feeding Tube With Rare Disease

    When I was first put on nasojejunal (NJ) tube feedings* by the gastroenterology (GI) team at my local hospital in 2016, I was too weak to object. I had just been diagnosed as failure to thrive and having gastroparesis. Even though I was 19, my parents had signed the consent because I was so out [...]
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    Kimberly Clapp
     • 
    @kclapp
    November 4, 2021

    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

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