To Get Diagnosed

This is a picture from high school that makes me cringe now looking back at how hyperextended my shoulders and elbows are. It took over 20 years and 20 doctors for me to get diagnosed. This article and this article both explain why it is so important to get diagnosed. They also explain why it's so important for me and others to spread awareness, especially if my girls end up having Ehlers-Danlos Syndrome as well. I am an educated woman athlete with a college background and career in health and exercise. I know how to research, seek out doctors, and don't think twice about getting second opinions. I can't imagine if 20 years and 20 doctors is my experience, what is someone else's might be who doesn't have those advantages? Unfortunately the journey doesn't end after diagnosis. Even after I finally got answers, I still had doctors not know or understand EDS, not believe me, think my pain was just in my head, and completely dismiss my documentation from other doctors.


"Sometimes you won't understand why you had to go through certain experiences until the very moment when the exact thing you went through is what allows you to help someone else."


It is now not only my goal to spread awareness, but also to take part in any research, questionnaires, or studies so it can help further knowledge and treatment about EDS. If you also have EDS, I encourage you to sign up for the EDS/HDS Global Registry and keep an eye out on ways you can get involved including clinical trials.