The Problem of Adaptation in Ehlers-Danlos Syndrome

The problem with EDS is that it’s a disorder of connective tissue. The collagen that we produce is faulty — due to a genetic defect preventing differential genetic expression from folding the specific collagen protein properly. Thus, the tissues that support and protect the joints, organs, and organ systems are faulty and prone to injury. For instance, when I get injured, there’s no way to tell if that specific injury will remain stable. I may even injure myself in another part of my body due to the compensation that’s forced on me from the initial injure itself.

For example, say I was to tear my meniscus in my right knee. lets pretend that I’m a stay at home mother who has to take care of the house while her husband is away at work, and two children aged 8 and 4. It comes with the territory that I’d be on my feet all day; making lunches, cleaning the house, entertaining and cleaning up after my kids. I decide its best to use crutches for the first two weeks and brace myself until I can get in to see my surgeon. I try and alter the way I pick my children up, and the way I clean. I begin to rely on my upper body, my shoulders and arms, to make up for this sudden and drastic loss of mobility. After a few weeks, my arms start to give out and I have to redevelop a system of adaptation all over again; this time with fewer and fewer resources on hand.

This is the most frustrating side of EDS: how little time we have between injuries, and what little notice we have that an injury is coming.

I’m still trying to figure out a way to cope with what EDS throws at me; its difficult when the static aspect of your disease only surfaces if you spend your life lying on your back in bed.


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