Hi, my name is Only1Darci. I'm here because I want to chat with other people who are experiencing a life similar to mine.
#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #PTSD #ADHD #OCD #Grief #Alpha1AntitrypsinDeficiency #Fibromyalgia #MarfanSyndrome
6 reactions •
1 comment
Hi, my name is Hada22. I'm here because
#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #OCD #Dysautonomia #MarfanSyndrome #EhlersDanlosSyndrome
2 reactions •
2 comments
Hi, my name is Scarlett. I'm here because I have an informal diagnosis of hEDS. it could also be marfans, we're not sure yet,but it's very real and I'm in a lot of frequent pain. just trying to understand it all.
5 reactions •
7 comments
Hi, my name is malseward.
#MightyTogether #BipolarDisorder #PTSD #Depression #ADHD #ChronicPain #MarfanSyndrome
2 reactions •
1 comment
Hi, my name is Riley8234. I'm here because my Daughter-in-law and granddaughter have Marfan Syndrome.
Batman villain takes EDS more seriously than my doctors!
#EhlersDanlosSyndrome #EDSAwareness #ChronicIllness #ChronicPain #Batman #MarfanSyndrome
2 reactions 
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
12 reactions •
14 comments
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
3 reactions •
23 comments
Latest
