Marfan Syndrome

One distinct part of living with a health condition—especially a rare disease (diagnosed or otherwise)—is having to explain, and re-explain, what it’s like to manage it. Fluctuating, changing, unpredictable, and under-researched symptoms can make it difficult for others to fully understand how to support you or empathize with your experience.

What’s something that’s often misunderstood about living with your rare disease?

💌 Feel free to share with us below.

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

Batman villain takes EDS more seriously than my doctors!

#EhlersDanlosSyndrome #EDSAwareness #ChronicIllness #ChronicPain #Batman #MarfanSyndrome

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

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