Here are a couple of articles that were published by,
•EDS UK Fragile Links
As my conditions are quite rare and life threatening they wanted to do an article about myself to try and spread the word.
I have attached pictures of them as I currently cannot find the website links!
I was really touched by one man who had a stroke and was finding life really hard adjusting and even thought about taking his life. He saw my story and it gave him hope and with that he wrote a very touching letter to me thanking me for being brave and sharing my story and true life struggles. That day I helped one person and that was enough, I wish I could help more hence this site, I don’t really know how all this works but I’m doing my best and that’s all you can do 👍