Stiff-person Syndrome

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Stiff-person Syndrome
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    Community Voices

    A diagnosis...

    <p>A diagnosis...</p>
    6 people are talking about this
    Community Voices

    Just curious, have you ever been misdiagnosed?

    If so, how did that label effect how you were treated by medical professionals?

    Did it have any long term consequences such as difficulty obtaining disability?

    Considering writing a short story on the negative impacts of being misdiagnosed. My experience led to years of delayed necessary treatments, medical gaslighting, and Inability to obtain disability.

    6 people are talking about this
    Community Voices

    I’m new here!

    Hi, my name is JenniZebra. I'm here because I suffer from Stiff Person Syndrome and CVID, a rare primary immune deficiency disease. I also had a battle with Lyme Disease in 2017. I hope to connect with other zebra's! 🦓💪

    #MightyTogether #stiff-personSyndrome

    4 people are talking about this
    Community Voices

    I'm new here!

    Hi, my name is rkjensen222. I'm here because I am a retired publisher and helped one of your members publish an important book associated with Autism Spectrum Disorder. I hope to connect with Matt Weatherford and other autistic adults here, as well as adults dealing with what is known as a "silent illness" such as debilitating autoimmune conditions where on the outside they may look fine, yet, in reality, their immune system is literally killing their bodies in various ways over time. These autoimmune conditions have different diagnoses, yet, we share many of the same experiences in social settings, as well as similar symptoms, although, of course, many different symptoms that affect our bodies and minds in various ways. I have a belief that if one day people start a support group that is all inclusive of various "silent illnesses" people suffering from these conditions will benefit greatly and find many answers from fellow members they have been looking for for years.

    #MightyTogether #AutismSpectrumDisorder #silentillness #AutoimmuneDisease #autoimmune #silentillness #Autism #MultipleSclerosis #RareDisease #StiffPersonSyndrome

    5 people are talking about this
    Community Voices

    Have you ever met anyone who lives with the same rare disease as you? What was it like?

    <p>Have you ever met anyone who lives with the same <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a> as you? What was it like?</p>
    10 people are talking about this
    Community Voices

    How long did it take you to get diagnosed with your rare disease?

    <p>How long did it take you to get diagnosed with your <a href="https://themighty.com/topic/rare-disease/?label=rare disease" class="tm-embed-link  tm-autolink health-map" data-id="5b23ceb000553f33fe99b3c3" data-name="rare disease" title="rare disease" target="_blank">rare disease</a>?</p>
    19 people are talking about this
    Community Voices
    David Napier

    The Power of Family Support When Coping With Stiff Person Syndrome

    The 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 go with that. I’m fully awake, fully conscious, just a prisoner in my own body. Although the seizures are short in duration, they are terrifying and horrendous. But the worst thing is I know they are coming and can do nothing about it. I am just a passenger, and I can’t communicate because my ability to speak has gone. This condition wears me down. No two days are ever the same. I can be enjoying the TV or reading a book or listening to music and then out of nowhere I have full body tremors. No part of my body is spared. My temperature spikes and I can do nothing about it; I just have to ride it out. Often I have lost the power of speech, but the really hard part is watching the person I love become frightened even though she has seen this many times before. And then she puts her hand in mine and it stays there until my symptoms are under control. This journey, this climb is not about me, it is about us — my wife and I. She is the one holding the rope, she is the one who is stopping me from careening down the mountainside, she is the one who encourages and strengthens me. And this climb has helped us to educate and support people on a similar journey. Some people even laughed when I said I had this condition, but we are no longer laughed at. We have begun to educate and inform people on stiff person syndrome and the devastating effect it can have on people’s lives.

    Community Voices

    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

    8 people are talking about this