Hi, I’m Hannah. I’m 13 and I was diagnosed with hyper mobile EDS the summer before I started middle school. It was really scary at first. How can I keep up with classes? How can I have a social life with a serious disease like this? It’s still scary but the fears are different now. How can I avoid the ever present question of, “Are you okay?” The future is the scariest to think about. How can I go to college or have a job if I’m sick all the time?
But this website has really helped, it shows me that I have hope of living a fairly normal life. The only person I known with EDS is my mother, who has both vascular and hyper mobile. She is in near constant pain and can rarely leave the house or even get out of bed. I thought for so long that my fate was to only get worse and worse, but I can see that I can try to have a successful future if I work hard and stay active.
Reading peoples’ own stories makes it easier to have faith in the future, which is a subject I tend to avoid thinking about like the plague. I do try my hardest to keep up, despite having missed over one quarter of the school year, I am in several advanced classes and have a large group of friends. I was diagnosed with POTS recently and it makes everything harder, but I push on. I hope I can be as strong and successful as the brave women who shared their own stories.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
I know this is a delayed response but I wanted to reach out to you. I am a 24 year old who also has EDS hyper-mobility type. I wanted to let you know that you absolutely can have a life. I am a high school teacher and while college was a struggle at points, I graduated Cum Luade. I am married, have a good social life and love my job. Your diagnosis in no way means you cannot have a full and wonderful life. I also strongly recommended careful exercise. I started physical therapy this year and it dramatically changed my quality of life, I wish I’d started at your age. If you ever need another person with EDS to talk to I am happy to help.