EDS - Zebras need Zebras

As Ehlers Danlos sufferers, we understand the true meaning of pain and frustration. The long treks to physiotherapists(PT's), the sickness caused by painkillers and the pain itself, the lack of understanding even in the medical community and perhaps worst of all, the people who think that invisible pain must be invented pain or an excuse for laziness. So, what is EDS?

Ehlers Danlos Syndrome is a rare group of connective tissue disorders caused by a defect in the bodies collagen synthesis. It varies from mild to life threatening, and most commonly affects joints (hypermobility and chronic pain) and skin (sensitive, stretchy and easily bruised/scarred). It also causes dislocations/subluxations (partial dislocations) of joints in many sufferers. Because it is rare it is often misdiagnosed. Many people suffer for years before anyone even realizes that they could have EDS or a real medical condition.

This group has several aims:
1. To provide support to both sufferers of EDS, and their friends/family.
2. To provide a base for information to be shared.
3. To raise awareness of EDS and all it can do to the body and how it impacts daily life.

Please share the positives as well as the negatives of living with EDS and its many complications it can bring to our lives. It is awful to find that you can't live the "normal life" you are taught to live, and that things that you did in the past are no longer an option.
To survive without losing our minds, we need to find new things to do to replace old activities or adapt the ones we can, and ways to achieve our goals whether ones set before EDS became a part of daily living or new goals that have been made.
Helping others to live with EDS seems a good start, and raising awareness so that doctors recognize the condition earlier and understand it better. The medical slang for someone with a rare or obscure medical condition is a Zebra. Medical students are sometimes taught ‘When you hear hoof beats, think horses not zebras’. In other words, always look for the obvious problem rather than the unusual. We are Zebras because doctors make us so, because they are not aware how many of us there are, so join up, get diagnosed, and help us to show the world what EDS is all about and how we are still human beings(and as such deserve to be treated so).


If you have any problems, or would just like to talk in private away from FB then please email us at [email protected]
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