So I have found myself very close to someone suffering from Vasculitis and thanks to this has also developed Addisons disease. Admittedly I had never heard of this condition before and I have tried to read up as much as I can.
She showed me the spoon theory website which I think really helped me understand where she is coming from with regards to the fatigue she experiences and the pain etc.
I still know very little about her specific condition as I know there are many variants within Vasculitis, I just wanted to see if anyone had any tips for the problems she is having.
Palpitations, a lot... The feeling of struggling for breath at times. Pain in her upper right chest (there is a shadow on her right lung which concerns) and a lot of pain in her belly at times. She is already suffering from kidney damage and is on a hell of a lot of steroids, combination drugs etc.
I suppose I'm hoping other people with similar symptoms have some tips I could share with her. For someone with limited knowledge of this condition it sounds bloody scary to be honest. She is only 28 and her life has been so seriously affected by her diagnosis. I just want to help her and feel there is nothing I can do
I got in touch with a doctor from Newcastle University who was running a stem cell trial for Addisons disease, but his reply was it only helped 2 out of 13 patients, it's hard to find anything regarding Vasculitis.
Any advice would be great, thanks guys and all the best.