Dear all, Many of us know Rebecca Gorman . Let us pray for her health on a regular basis, her Christian name is Irene. I am copying below her message with her permission. Hi friends, I want to let you know Ive been diagnosed with Ehlers Danlos Syndrome, with secondary Dysautonomia, Neurocardiogenic Vasalvagal Syncope, Postural Orthostatic Tachycardia, inappropriate hip development due to lack of enough usage in childhood and adolescence, along with my sleep apnea... all secondary to (resulting from) EDS. Just so you know why I havent been around, Im almost completely housebound/bedbound at this point. Am hoping with appropriate PT and management that symptoms will improve, but as there is no cure for EDS or Dysautonomia, there isnt going to be a time when I get better. Instead Ill be acquiring appropriate mobility equipment so that I can live a fuller life. Its taken me a while to be public about this because its taken me a while to get answers. Its hard when you cant stand much or walk far and driving tires you out and can send you to bed for days, but when someone asks you why, all you can say is I dont know. After years of of hard work and research and perseverance, Ive finally gotten the tests and examinations to provided diagnoses and explanations of why my body does the things I does. So now I can say something more than I just cant. Im effectively an orphan, so I definitely appreciate any social support friends can provide. I may not be present, I may not be able to communicate a lot, but you are all in my heart and in my thoughts. With management of my condition improving due to understanding whats going on finally, I hope to be able to increase my communication and presence in the future. Thank you for your understanding and friendship.
Posted on: Sat, 11 Oct 2014 00:25:36 +0000
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