My Life with Ehlers-Danlos Syndrome, Part 1

I feel like I’m constantly about to come apart at the hinges.

It’s too much for my brain to handle sometimes.

Ehlers-Danlos Syndrome (EDS) is a collection of connective tissue disorders in which the body’s supply of collagen, a protein that holds tissues together, is defective in some way. It has too much laxity, causing tissues in the body to become weak. Because collagen exists everywhere in the body, it affects nearly every bodily system. The main symptom of EDS is joint hypermobility. For example, the average person shouldn’t be able to rotate their shoulder joint so that their arm looks like it’s been put on backward or press their palms to the floor when bending over—but I can.

However, EDS is so much more than just being “too bendy”. There are 13 subtypes of EDS, the most common of which being Classical, Vascular, and Hypermobile. It is also possible to show characteristics of more than one type—most of my problems are with Hypermobile EDS (hEDS), but because I also have a heart murmur and have had issues with valve prolapse, this means I also show signs of Vascular EDS. My doctors are quite baffled by me most of the time because I show symptoms of an illness that is so rarely seen.

I didn’t start developing severe EDS symptoms until I turned about 18, but looking back, all of the signs were there. I was never able to walk with my feet pointed forward—they were always pointed out (a symptom known as Trendelenburg’s Sign). Sort of like a ballerina in 1st position, or a duck, if you ask my mom.  I used to sprain my ankles so often that my mom kept support bandages in the house for me. I’ve struggled with headaches since I was probably 9 or 10, as well as significant skin fragility, and my stomach has always been a disaster. These were all signs of what was to come, except that there was no way I could’ve known.

I didn’t start developing severe EDS symptoms until I turned about 18, but looking back, all of the signs were there. I was never able to walk with my feet pointed forward—they were always pointed out (a symptom known as Trendelenburg’s Sign). Sort of like a ballerina in 1st position, or a duck, if you ask my mom.  I used to sprain my ankles so often that my mom kept support bandages in the house for me. I’ve struggled with headaches since I was probably 9 or 10, as well as significant skin fragility, and my stomach has always been a disaster. These were all signs of what was to come, except that there was no way I could’ve known.


Next week, Sabriyah continues to chronicle the patient experience with Part 2. In the meantime, you can follow Sabriyah on Instagram at @sabriyahstar or read her other work on The Mighty.

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