Ehlers-Danlos Awareness Month – Fact #3!

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In honor of Ehlers-Danlos Syndrome awareness month, here’s EDS fact #3 (provided by the EDNF): There are six major types of EDS, each classified according to their manifestations of signs and symptoms. 

4 thoughts on “Ehlers-Danlos Awareness Month – Fact #3!

  1. Question — I have gathered that a geneticist is a must when handling an EDS diagnosis, but what type of doctor typically diagnoses it initially?

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    • There’s actually not really a typical layout when it comes to diagnosing EDS. It can be extremely difficult to diagnose, often taking years before someone connects the dots between the symptoms – too often it’s missed entirely.

      A geneticist is definitely a must so that they can help ensure you’re diagnosed with the correct type or that you don’t resemble a different disorder like Marfan Syndrome – and so they can make sure you get the proper monitoring. But even a geneticist can’t be a 100% sure unless you’re one of those who come back with a positive genetic mutation known to be related to EDS.

      The doctor who initially suspects it can range from an eye doctor to your GP (if they’re aware of the disorder, many aren’t). It depends largely on how you present. As far as my tissue disorder, the first person to spot a symptom and send me to the geneticist was my optometrist. After that it was entirely me who got the ball rolling on my diagnosis, I started researching and connected the dots myself and then told my GP what I found, who then sent me to the specialists, who confirmed it. That seems to be fairly commonplace in those I’ve talked to with tissue disorders.

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