EDS awareness 2023- Day 1

Ehlers danlos syndrome  

 31-day challenge 

2023


Day 1 – You and Your Part of the World

-Introduce yourself! Who are you and where in the world are you celebrating EDS & HSD May Awareness Month?


Hey Guys, 

The Cracked Zebra here kicking off our awareness month by introducing myself. 


 I am a chronic illness Warrior who got officially diagnosed with EDS in 2019 at the age of 39 years young. I was diagnosed at the only EDS clinic in all of Canada. I am one of the lucky ones to get in. The screening process to be put on the 18-36 month long waitlist is brutal and many don't make the waitlist at all. 

I deal with Gastroparesis, Pots, and Mcas which are often grouped in with EDS. There is no cure…. so the only thing a diagnosis has done is make my entire existence come together and finally make sense.  I have to admit it was a breath of fresh air to be vindicated after years of being told it was all in my head. 

All the aches and pains, the constant ankle rolls, the numbness and tingling, the hernias, the stomach issues, the patella that likes to go where it pleases even after surgery to keep it stable. The fact that my gymnastics instructor was partly mortified/ part ecstatic, at the flexibility I had and the "tricks" I could do. Then there is the pain…the excruciating pain. It started in my legs and back and has spread all over. Pain is no joke guys!!! 


Now, to be totally fair, it didn't make everything make sense….

Because why have only one genetic condition when you can have multiple!!!! I know I am not alone here in having multiple chronic illnesses. 

I also have Limb Girdle Muscular Dystrophy but we will save that for September 30th when it is Lgmd awareness day. 


So this is me! How about you introduce yourself and tell us your story on Facebook ☺️


I see you...

I hear you...

and I am so glad you're here! ❤️






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