Published: 10/12/2020

Diagnosis gave me a whole new perspective on my life

All of my life I knew I was different. Constantly spraining my ankles, being able to take my jaw out of the socket, very flexible, knee surgeries, premature labor with both children, bruising easily… the list keeps going and going. 

In 2014 I almost died from an internal hernia that had pulled my small intestine through and strangulated it, by the time the surgeon got to the hospital 14 feet of my small intestine had died and had to be cut out. I found out years later hernias are part of EDS. 

I found out that I had EDS because when my niece was diagnosed the doctor asked my brother, “who else in your family have these symptoms?” he immediately said, “Annie.” 

I went to my Primary Care Doctor and she had me do a number of flexibility tests and I passed with flying colors! She then referred me to a rheumatologist who verified that I had classical Ehlers-Danlos syndrome (cEDS)  with hypermobility and severe Temporomandibular Joint disorder (TMJ). He then told me there was nothing he could do for me and there is no cure. I was elated to finally know the reasons why I was so different from anyone else but sad at the same time. It gave me a whole new perspective on my life and how better to deal with these issues day to day and try to find the positive.

I am currently seeing a TMJ Specialist who has EDS as well. I am almost 56 years old and have skin like a baby, I can put my feet over my head, I can sit in a “W” on the floor, I can swing a golf club like you wouldn’t believe (my first hole in one May 2019)! I am expecting my first grandchild in August, a boy. I am just praying he does not get EDS. But if he does I will know all of the signs and will be equipped to help him throughout his life.

I guess what I want to say to my fellow EDS’ers is to hang in there, try and be positive, there will be good days and bad days but you are not alone.

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