It’s (Not) All In Your Head: Ehlers-Danlos Patient Learns Childhood Quirks Were Warning Signs for Rare Disease
May 9, 2013
It’s all in your head… or I don’t “see” anything wrong with you. That is all I heard for many years. I was a freak show as a child. My friends all wanted to see the tricks I could do. It was all fun and games, watching me put my legs behind my head and walk on my hands or bend my hands all the way backwards so my fingers could touch my arm. Little did I know I was doing myself harm.
My pain started getting bad as a teenager. I had a boyfriend take me by the arm and pull me—not meaning to do any damage— but he did. I ended up having surgery because the cartilage tore and had to be removed. That doctor told me then, at the age of 17, that I would have joint issues for the rest of my life. I didn’t realize what I had or how bad it would get. I was always tripping and falling and having joint issues.
I got pregnant at 39 and had my son. After his birth, things really went down hill quickly. I kept going from one doctor to another and getting no relief from my pain. My joints would dislocate and by now I had Osteoarthritis and serious bone degeneration.
At 46, my doctor on base referred me to a rhuematologist who FINALLY diagnosed me with Ehlers-Danlos syndrome: a genetic connective tissue disorder and referred me to a genetic specialist at John Hopkins in Maryland where my diagnosis was confirmed. I was also told I had Fibromyalgia, spinal stenosis, neuropapthy of the hands and feet and numerous other things that were all linked to EDS.
I am trying to keep this as short as possible, but in saying all of this.. for the years of doctors and pain medications and antidepressants and ER visits and never wanting to get out of bed and dealing with wheelchairs and almost having to give up life in general because of severe pain…I have finally found a doctor who can help me manage my pain. I’m looking forward to a life where I will be able to do all the things I couldn’t do for so long– like gardening, sewing, walking, visiting the zoo, playing outside with my son and (most of all) dancing!
The last thing I want to say though is THANK YOU to the most incredible husband in the world. He has loved me through all of this– even when we thought I would not be able to walk again. My back and hips were so bad at one point we thought I might be in a wheelchair permanently, and he didn’t even flinch. He carried my food up to our room and waited on me hand and foot and has loved me through it all. He IS the perfect husband and I thank GOD for him every day! Thank you for this opportunity to share my story.
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