adria

DIAGNOSIS



I have Hypermobility Type Ehlers Danlos Syndrome. I have my prescription for reinforced knee and ankle braces (and I wear a wrist brace now as well) and get pool physical therapy twice a week.

I still need some DNA testing to rule out or confirm the scary Vascular Type of EDS and I still need an echo cardiogram to check for a common heart problem that happens with EDS.

I actually cried when I called my dad to tell him. And I keep tearing up a bit every so often now. Such a huge relief. All these years right from early childhood I had these problems and pain and now I know why. From 4years old to 27 I was living with a frightening, progressive, disruptive, limiting and painful mystery. No more.



Here is my crazy list of confirmed diagnoses now:

-severe asthma
-environmental, chemical, animal allergies (some severe and life threatening)
-mild food allergies
-IBS
-endometriosis
-migraines (severe barometric pressure triggered)
-irregular ovarian cysts which are separate from the endo
-fibromyalgia
-hypermobility type EDS

The specialist said that my arthritis diagnosis from childhood may be incorrect as the EDS could explain all my pain and messed up joints but explain why I have very little swelling. So that one gets struck from the list.

Here is my friend Izzy's perfect explanation of what Hypermobile Type EDS is:

And a quote from the wonderful girl who wrote me a few years ago telling me she thought I had it. Way to be so totally right Erin. (Thank you): ""EDS is still poorly understood by medical professionals. As a result, it's widely under-diagnosed and there is no treatment other than managing the various symptoms. Raising awareness is so important....The gene mutation expresses itself in wildly different ways across different patients, making it even harder to diagnose and treat sometimes. But what we all share is wonky collagen, which affects every body system."