We can help the medical community and people who are under-diagnosed get the proper screening and treatment.

Hi My name is Angie and I have Ehlers Danlos Syndrome - Hypermobility type. Currently there is no genetic test for this condition although I am waiting for genetic testing to see if I have an over-lapping sub-type. If this sounds like something foreign to you, allow me to explain. Since I was young, I always had bendy joints and in my adolescence, my shoulders were affected first - they subluxed meaning they could pop in and out of their joints quite easily. My elbows can also bend more then 20 degrees. I always thought this was completely normal and, thought that it was something everybody went through. I was wrong. Until I went to a physiotherapist, I never heard of the term 'connective tissue disorder.'

When I was 18, my symptoms progressed to a fast resting heart rate as well an autoimmune thyroid condition - it was at a recent cardiologist consult that my specialist told me that EDS - hypermobility type - is linked to my arrhythmia. My cardiologist was the one who referred me to genetics. I am indebted to him.

I feel blessed that we are 99 percent sure that I don't have the vascular sub-type which could potentially cause aortic rupture and significantly reduce life expectancy. I am happy that I can do what I can like gain strength and take medications, but so much more research needs to be done. Also, awareness is important.

Joint laxity and instability is one thing I experience. I hope to get as strong as I can. Neck / Cervical instability is something with my specialist is trying to rule out. I am hopeful that with training at the very least will help keep my muscles strong to stabilize my joints. Bracing and potentially surgery is a treatment for those who are even more unstable.

Join me in supporting real change. Let's support good in the world and make a difference. Help us for The Ehlers-Danlos Society. Thank you <3

-Angie-

Just a small donation will go a long way to helping me meet my goal for The Ehlers-Danlos Society