Hello Crafty People!
As some of you may know, I am an hEDS fighter and after losing a lot of my health, abilities, confidence and self worth to this illness I discovered a whole world of crafty therapy and it honestly changed my life.
Not many people, including healthcare professionals, know much or anything at all about Ehlers Danlos or Hypermobility Spectrum. The thing is, like any spectrum there are vast differences between the extent to which people suffer; some people experience nothing more than feeling ‘double-jointed’ and having a fun party trick to show people! But others experience debilitating symptoms.
I am much closer to the latter.
I only heard about hEDS after a previous awareness campaign when my Dad heard a radio interview about it and sent me the podcast later to listen to because he thought it sounded like a good fit for the baffling spread of the unknown illness(es) that were hitting my body hard & fast.
He was right, and suddenly I discovered that all these seemingly unconnected health problems I was having weren’t simply coincidence; there was finally an explanation that made sense!
Discovering EDS & HSD was only the first hurdle to the diagnosis and treatment I needed; now I knew what was happening I had to convince my Drs. I am not going to lie, this was tough. IS tough. I haven’t finished those fights yet; but I am so much closer thanks to the work done by The Ehlers Danlos Society and EhlersDanlosUK.
Their websites are FULL of information about all of the different types of EDS & HSD, plus information about how to talk to your Dr about it and different treatment options you may benefit from.
That is why I am so invested in promoting awareness; the more I do to spread awareness the more likely it is that this information will end up in front of someone who desperately needs it.
Over the next 2 weeks I will be sharing lots of information about my experience of hEDS, fighting for recognition and the ways I manage my chronic illness.
Also, I am so very excited to say that with a LOT of help from my wonderful friends I will be hosting the 1st Annual Ehlers Danlos & Hypermobility Spectrum Awareness Hop from 24th May – we have some absolutely AMAZING prizes up for grabs so keep an eye out for announcements about that as we get closer to the Hop itself.