- RKD
02-28-25
EDS: SPOKEN WORD: PART TWO
Today is the one year anniversary of the best day of my entire life: 02-28-24: my geneticist appointment: the day I saw the most amazing doctor I have ever seen after a lifetime of struggle, who instantly recognized all of the signs of three types of EDS: an incurable genetic connective tissue disease (Hypermobile, Classical, and Vascular) on me, who told me that it was never in my head but physical this entire time, that all of my severe anxiety disorders I have had nearly since birth are tied to this genetic disease, and who helped me start to find solutions and finally get answers. The fact that it was rescheduled and then happened to be on the one day of the whole year that is the official Rare Disease Day, is infinitely special to me. I barely made it through so many times, but especially that year, and now last year, with the largest increase in medical issues and conditions, hospitalizations, and ambulance trips than ever before. I swore that if I ever officially got a diagnosis and answers, I would spend the rest of my life raising awareness because of the severe impact on me and so many others living with it. I am beyond grateful for another EDS warrior Chloe and the largest worldwide EDS organization, the Ehlers Danlos Society, for sharing my story, for the greatest strides in research they have finally been able to make in this past year alone, for my dear EDS warrior friend Joey for all his support and raising further awareness, for the few friends who have constantly been there for me throughout this whole process, and my immediate family. Every night and every day is a battle, yet I remain fighting for hope, peace, and relief in any way that it comes. When it seems more than bearable, I remember that we have been chosen for this task and suffering, and it is a high calling to be a part of this darker and deeper side of humanity. Today I honor all who have passed due to this disease, and may all who still breathe have an increase in strength, peace, and comfort. To my fellow warriors: never forget who you are, never stop fighting, and never be afraid to do what is most helpful for you and your own journey.