morgellons

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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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    Has anyone ever had an MRSA skin infection with lesions that don't heal for a long time? #MRSA #skinlesions #morgellons

    #MethicillinResistantStaphylococcusAureus

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    does anyone have Morgellons Disease? my mom has it, and we'd like to talk to others who have it as well. #morgellonsdisease #morgellons #RareDisease

    #RareDisease

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