I am SOOO excited to announce the launch of a brand new group today! It is 18 months since I was diagnosed and one of the things that I’ve struggled with has been finding fellow zebras here in the one place that is covered in real zebras… Southern Africa. I found the odd one here or there at the beginning but I needed a group to belong to and didn’t have the resources to start one.
Fast forward 18 months and a little while ago, a wonderful and determined lady called Tina contacted me. It turns out that she also has EDS and she has been doing a lot of hard work behind the scenes putting in way more work searching for people than I ever did.
So suddenly, almost out of nowhere (for me anyway), thanks to Tina, and with the help of an amazing bunch of zebras who have connected, shared, made themselves vulnerable, and come together in such a short time, we have suddenly, in the first week of EDS Awareness month, become a Dazzle all of our own! What’s a Dazzle you ask? Well, a group of zebras of course! Why Zebras? You can read all about it HERE.
We are too small still (being rare and all) to have any funding whatsoever, or to have our own website so this will have to do for now. But Rare Diseases South Africa have been and continue to be, a great support and you can always contact us here on this blog or email me on JPeaSmith@KingRoadChronicles.com for more information.
Over the next few months, I will have the huge pleasure of sharing many of the stories of all these new women here as guest bloggers, in their own words. So please follow us and share the love and awareness!
And by the way, EDSZSA is quite easy to say, just squish the “s”s into the “z” and you get Edza 🙂
If you live, work or are a citizen anywhere in Subsaharan Africa, and have or suspect you may have Ehlers-Danlos Syndrome, then give us a shout, comment below, or ask to join our closed (and safe) Facebook Group.