I can’t come up with an original Jak post for you at the mo because I’m too exhausted, but I’ve read some interesting articles lately (well, when I say read I mean skimmed through in a dizzy foggy haze!) which I thought I’d pass on.
This link was posted on my Facebook wall by my lovely friend Daniel, who doesn’t have EDS himself and which goes to show how thoughtful he is to see this and think of me 🙂 It’s about the celebration of our lives as disabled people against all the odds.
The inspiring Jen Brea is currently at the Sundance Film Festival promoting her film-in-the-making ‘Canary in a Coalmine’ about the stark realities of life with M.E. For anyone who wants to follow developments Jen has a Facebook page and Twitter feed.
I also loved the ME Association’s facebook status update this week:
This new paper on Mast Cell Activation Disorder appeared in the Allergy & Clinical Immunology Journal (Vol 27 No.3) in September 2014 and was written by the excellent Dr Afrin. I’ve copied all the symptoms listed in this article (see below) which can indicate MCAD and marked the ones from which I suffer/have suffered in red. Out of the possible 143 symptoms associated with MCAD I have/have had 75 – on top of all my M.E. and Ehlers-Danlos symptoms. When you look at it in black and white like this it does make me mad that I’m this sick and yet just left to get on with it – no consultant involvement and I maybe see my GP twice a year for a sick note for my insurance company and a repeat prescription!