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Posted on Oct 20, 2017

A Life With Ehlers-Danlos

Hello! My name is Kaitlyn and I shall be your guide through a day in my life with Ehlers-Danlos Syndrome. For those of you who don't know, Ehlers-Danlos Syndrome (EDS) has multiple versions, of which I have the hypermobility version, the mildest version. The hypermobility version is a connective tissue disorder which makes me very prone to dislocations. I have suffered two full right knee dislocations and currently am in a temporary cast from a dislocation of my left elbow. I do not recommend dislocating your elbow by the way, very painful. To break down my dislocations....1: Summer before 7th grade, pushed off the bottom of the pool. 2: 4 days before Junior year prom, turned on my brothers scooter, barely moving. 3: 10/17/17 on my way to my chemistry midterm, ankle rolled, jerked arm in air causing elbow to dislocate. I didn't even fall on my left side. I have had many partial dislocations during my life, which causes me to live in fear of exactly what happened on Tuesday, where a simple fall can become a five hour trip to the ER. My joints constantly feel like I am 80 years old and to write for a prolonged period of time I am going to have to invest in finger splints so my fingers don't go to far back. That fact is that needing braces could extend to many of my joints where I might have to wear braces on a lot of my joints to try and prevent dislocations. My life works around my EDS where I live in fear of injuries and dislocations and the knowledge that at 19 years of age I have decided to not have biological children so they do not suffer through EDS like I do. I see you fellow Zebras and you have my support and faith that you will get through it.