Jun. 10, 2022
TOPIC: Patient Stories
Posted by Julie Ostroff
I am 17 years old and a high school junior with hEDS (hypermobile Ehlers-Danlos syndrome). I should be attending a performing arts high school for musical theatre, but that’s not the case for me anymore.
About a year ago, I was diagnosed with EDS by a geneticist, which has progressed to a point where I can’t go to school in person or do my art. I am in my room almost 24/7 because of the amount of pain I’m in. I am also an only child and haven’t seen any of my friends since October.
It feels like my whole body is shutting down, and every poke, doctor visit, MRI and test has come back normal (except for my dysautonomia and POTS), even though something is wrong. Now, they think I have neurological issues as well. If that’s not the case, I will get ketamine infusions to try to stop the debilitating pain that lingers inside of me 24/7.
When most people think of a disability, their thoughts go to someone who is paralyzed or who is affected visibly. However, most people who are disabled have an invisible illness that fluctuates in severity. I usually have to tell people what EDS is, and they often give me a strange look.
I want people to know that their support goes along way. If you have a friend or loved one who has a rare disease, look it up and try to educate yourself. Most of the time, when we try to explain what’s happening, it can be confusing to able-bodied people. Doing your part to learn about rare diseases is crucial to us.