Here are a couple of articles that were published by,
•EDS UK Fragile Links (Have to pay for access unfortunately so screen shot only)
•NHS Community (https://www.kentcht.nhs.uk/wp-content/uploads/flipbook/31/mobile/index.html#p=17) PAGE 16 & 17
As my conditions are quite rare and life threatening they wanted to do an article about myself to try and spread the word.
After a few weeks I received a lovely letter from a gentleman who had health issues and was feeling very low and alone, he read my story and it gave him hope again. I then got posted again in the magazine about how spreading your stories do help others!
I was really touched 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 👍