MY STORY LIVING WITH hEDS (TYPE 3)
In October 2020 I was diagnosed with a rare, incurable disease called Hypermobile Ehlers-Danlos Syndrome (Type 3). It’s an incurable connective tissue disorder which affects my joints, skin, organs and can be very painful. It can be inherited from a parent with the same faulty gene, alternatively someone can be born with a new mutation so that the condition is occuring in their family for the first time.
Issues that may occur in someone who has hEDS are stretchy & fragile skin, frequent and recurring joint dislocations, chronic pain, sleep disorders, chronic fatigue, GI issues, PoTS, digestive disorders, pelvic and bladder dysfunction, and anxiety disorders. These are often more detrimental to quality of life than the joint symptoms.
For me personally, recurrent dislocations and chronic pain & fatigue has affected me most - leaving me wheelchair bound and having to wear lots of joint braces when I do daily activities.
I’ve chosen to shave my hair to raise money for this EDS charity so that more awareness and research can be put into the search for a cure, or even just better treatments. EDS has no cure and can be really daunting for people, I think it’s important that rare diseases are spoken about more and there’s a huge lack of funding put into them.