If you are on any form of social media, you probably see posts about May and EDS Awareness Month. If not, well here’s your post about it from a Zebra. May is Ehlers-Danlos Awareness month. It’s a whole month dedicated (I’m sure not exclusively) to the medical Zebras, the communities of chronically ill or disabled that don’t fit into the pretty little box most of the medical community is trained to look in when a person comes to them complaining of pain, digestive issues, bendy joints, etc.

The great thing about EDS Awareness Month is it gets exposure to the general population that may not otherwise know about EDS and it’s various types. Here are a few facts about EDS:

Fact 1: The most common form of EDS is Hypermobility Type (Type 3) and is commonly misdiagnosed as other chronic pain conditions (ie. Fibromyalgia). EDS-HT, also has no known gene mutation as of yet so genetic testing for anyone suspected of EDS-HT is mainly to rule out any of the other autosomal dominant types. This means that only one parent has to have the mutation to pass it on to a child.

Fact 2: Children as young as 3 can be diagnosed with EDS. My daughter was just clinically diagnosed with EDS at the end of April after waiting almost a year for a genetics appointment. As with most incurable conditions, early diagnosis is important to early prevention and management.  Which leads me to my next fact.

Fact 3: EDS is NOT curable. Let me say this again, there is no cure for EDS, only prevention. The best way to manage EDS is through preventative measures and management of issues as they occur. So orthopedic visits for any orthopedic issues, pain management, gastroenterology visits for digestive issues, bracing, taping, use of assistive devices, etc.

Fact 4: EDSers might look normal on the outside, but we are crumbling on the inside. We crumble because of the faulty collagen throughout our entire body. And collagen is in EVERYTHING. I read an analogy early on in my EDS journey that the collagen in a person with EDS is like a stretched out rubber band. Our collagen stretches and stretches but never snaps back.

Fact 5: EDSers will occasionally refer to themselves as zebras. This is because the medical community is taught to think of horses not zebras when they hear hooves. EDS is not the common diagnosis in a medical community because it’s considered “rare” and doctors want to avoid diagnosing “rare” conditions when it’s not there. This link is a great explanation and image of why EDSers are Zebras.

To me, EDS Awareness month means one month where the hope for exposure and discovering more ways to help my 3 year old Zebra by the time she gets to be my age. It means one more month where my friends and family can begin to understand what we go through daily. The following are some links to additional information, facts, and symptoms of EDS:

31 Random Facts About Ehlers-Danlos Syndrome
Elhers-Danlos Society
National Organisation for Rare Disorders – EDS
Ehlers-Danlos syndrome – oh that’s why I’m so tired!
Mayo Clinix – About EDS

Published in Illness / Disability