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My Life Shows Why We Need More Awareness About Ehlers-Danlos Syndrome

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Those of us living with Ehlers-Danlos syndrome (EDS) frequently experience the reality that friends, family, and more importantly, the medical professionals trained to diagnose and treat us, often seem to be at a loss as to what our condition entails.

Many of us have so frequently been told we “look fine” and there is nothing to do to help us. As we all know, that is far from reality and these uninformed doctors do us a great disservice by failing to assist us in seeking the help we need.

These medical professionals also can undermine our self-esteem by inferring that they question whether there is, in fact, anything going on with us.

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