“I wish people would just take five minutes to look up Ehlers-Danlos syndrome to raise awareness.”
These are the words of 15-year-old Mya Lilly Hurst, an Australian girl who suffers from Ehlers-Danlos syndrome, a rare inherited disorder affecting the connective tissues in the body. But when people ask her to describe why her joints dislocate so easily, and why her bones are so fragile, Mya Lilly tells them that she has “faulty” collagen–in essence, the “glue” that holds joints in place. And to further complicate an already complicated health condition, Mya Lilly is also allergic to pain medications, some of which have caused life-threatening reactions. For her, there are no easy answers.
Having suffered 10 broken bones and hundreds of joint dislocations, Daily Mail reports Mya Lilly is now confined to a wheelchair, because she can no longer bear weight on her left ankle. Her dream today is to somehow find a way to acquire a car that can accommodate her electric wheelchair. She’d also like to make her home more wheelchair-friendly. Click here to help her make this happen!
After multiple hospitalizations, Mya Lilly has been able to return to school, one that educates children with disabilities, and she’s looking forward to graduating from high school and attending college. Her goal is to study medicine and help raise awareness about Ehlers-Danlos syndrome.
Resources
- The Ehlers-Danlos National Foundation
- Mayo Clinic
- National Organization for Rare Disorders (NORD)
- Support Groups in the United States for Ehlers-Danlos Syndrome Patients
