Marfan Syndrome

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Marfan Syndrome
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    Big, scary medical decisions

    I was told by the neurosurgeon this week that I need spinal surgery for my scoliosis. It’s progressed in the past 6 years and he’s recommended I have T2-L5 done at a hospital 8 hours away from home. I’ve been in pain management for the last 4 years and tried many solutions to living with the curves and daily pain. I’m told it’ll be harder to recover the longer I wait, but I’m scared to move forward. #MarfanSyndrome #Scoliosis #ChronicPain #Migraines #duralectasia #ChiariMalformation

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

    Living with rare disease can not only feel rare in the sense of statistics, but also in building community and finding someone to share experiences with. Finding others that relate can be hard. Have you ever met someone that shares your same rare condition? If so, what was that like for you?

    Would love to hear your experience! Feel free to share in the comments below.

    P.S. If you need a resource to help you connect with others with rare disease, you can check out the nonprofit NORD, a great resource for rare disease patients: rarediseases.org

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

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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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    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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    I’m new here!

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

    #MightyTogether #MarfanSyndrome

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    Relief in sight?

    I have finally found a primary care doctor that listens! Hallelujah!! She agreed that something is definitely going on and disagrees with the current diagnosis (which I agree). She’s referring me to all of the specialists I’m requesting, including the Marfans Clinic for further genetic work to see if there’s an underlying additional connective tissue disorder. Hoping some relief is in sight, even if it’s just answers. Knowing is half the battle. #MarfanSyndrome #Hypermobility

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