AcousticNeuroma

For instance, as someone with Ehlers-Danlos Syndrome, I get asked to perform party tricks that demonstrate my hypermobility. Little do the people asking me to perform those tricks know that EDS also comes with a bevy of co-morbidities, immense pain, fatigue, and countless hours of physical therapy and doctors’ appointments.

So, Mighty community, please share in what ways people have diminished your actual experience with your disease or illness, just because they made assumptions based on your appearance, the party tricks you can do, or a “weird” or “inspirational” story they read online about someone else with your condition.

Your answer may be used in a Mighty story!

#RareDisease #CheckInWithMe #ChronicIllness #ChronicPain #Disability #MentalHealth #TheBendyBunch #EhlersDanlosSyndrome #CysticFibrosis #SpinaBifida #Cancer #KlinefelterSyndrome #AcousticNeuroma #Hemophilia #SUNCTHeadache

Rare Disease Day is a global campaign which aims toward equity in social opportunity, health care, and access to diagnosis and therapies for people living with rare disease.

In honor of Rare Disease Day, we’re here to spread some resources and support to anyone living or who loves someone with a rare disease.

📚 About Rare Disease Day: www.rarediseaseday.org

From The Mighty community:

🦓 Rare Weekly Newsletter: bit.ly/3ATKqgm

📍 Living With Rare Disease Group: bit.ly/3snIgTu

From our partner:

🤝 National Organization for Rare Disorders (NORD): rarediseases.org

#RareDisease #RareDiseaseDay #ChronicIllness #ChronicPain #MightyTogether #EhlersDanlosSyndrome #CysticFibrosis #SpinaBifida #Cancer #KlinefelterSyndrome #AcousticNeuroma #Hemophilia #SUNCTHeadache #SickleCellDisease