After nine knee surgeries, two shoulder surgeries, and one hernia surgery I finally know what is really wrong with me. While watching an episode of Mystery Diagnosis I began to recognize myself in the many symptoms of a rare genetic disorder called Ehlers Danlos Syndrome. Multiple joint surgeries, hernia, family history of brain aneurysm, joint hypermobility (knees bend backward, thumb can bend back and touch arm),fragile skin that tears and bruises easily, veins easily visible through skin...and that was just a few of the many symptoms I had in common with the patient on the show. When I approached one of my doctors with the idea that I might have EDS
he couldn't believe that no one had ever suspected EDS before. With his encouragement I went to see a cardiologist at KU Med. After a thorough exam I was indeed diagnosed with EDS. And so my journey begins.
skip to main |
skip to sidebar
An update on the daily struggles of living with a recent diagnosis of Ehlers Danlos Syndrome
What a great thing to do. To document your journey, not only for yourself, but as a way to keep those who love you involved without it being the overwhelming topic of every conversation. Thank you so much for being willing to share your journey with me. Although I wish it were different, I look forward to this journey together because I know that no matter how difficult the journey gets, you'll always be my very best friend who shares everything - good and bad - with me. I love you girl!!!
ReplyDelete