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After decades of dealing with quirky, what I thought were unrelated, health issues I was finally referred to a specialist in Boston.
Last month, after a thorough evaluation and review of my history, my geneticist diagnosed me with a connective tissue disorder known as Ehlers-Danlos syndrome (EDS).
Not only does this diagnosis account for the incredible flexibility that I’ve had all my life (think fun party tricks, people!) but also answers so many issues that I thought were all unrelated, as connective tissue runs all throughout the body. Issues such as my body’s difficulty to regulate temperature, mitral valve prolapse, Raynaud’s syndrome, varicose veins, blood pressure issues, vertigo, hair loss, and most importantly the chronic joint pain that I have been dealing with for so long.
I have lost count of the number of visits to my MD and the ER over the years; only to be sent home on muscle relaxers and pain meds.
I’m happy to now have answers, and more importantly the opportunity to create a plan of proper lifestyle changes I can make to help alleviate a lot of the symptoms I’ve always dealt with as a result of my EDS. You see, even though there are many therapeutic and med recommendations my physician has made, there is no cure.
This brings me to why I’m sharing all of this.
My initial reaction was to only disclose this information with my close family and friends, especially with all that is currently going on in the world. However, in my research, I have learned that people diagnosed with EDS are often diagnosed later in life, like me here at 41. This is because it’s lacking in research and awareness. And let me tell you, it can be super frustrating to deal with numerous medical issues and never quite getting the right answers.
So, I’m sharing my story to help raise awareness. Spreading awareness is the key to helping more people get properly diagnosed, gaining a better understanding of this painful disorder, and ultimately finding a cure.
Tags: advocacy, awareness, EDS awareness, Ehlers-Danlos syndrome
Categorized in: Stories