DebRA

I noticed the front page of the local paper today. I can remember when I first had this illness and met the woman whose granddaughter had the illness that DebRA raise money for and put the charity up on my blog. My illness is very similar as I was reminded today. Must drink my fortisips, huh!!!

http://www.debra.org.uk/

The BBC did some fundraising for the charity too which went up on my blog. There isn't much support for my illness though there is a very small charity .. but there aren't many of us really. Not too many people with epidermolysis bullosa either but it's an illness you're born with rather than develop later on and therefore there are children with it.

I, too, could easily develop skin cancer .. it goes with the illness as I suspect it did with Alex's. Not only could my illnes be solar induced .. but the sun .. because of my skin being so fragile could cause skin cancer too. I've also spent time in the tropics which won't have helped And been out in the sun too much while I was allergic to the ingredients in the skincream here .. found some American ones I was ok with though eventually .. the EC warned the companies to sort it out or banning the ingredient would become law ..I think it's still a voluntary thing ... I'm ok with most of them now .. well, I say ok .. my skin doesn't really like many of them but that's because of my illness .. I plop on a hat if I'm out for long.

Yeah .. this is a difficult illness .. well, there's more than one illness .. but the skin one is difficult .. it affects my mucous membranes too which means both my insides and outsides can be affected..

Anyway, I remember meeting the little girl's grandma and she helped me understand more about my own .. though as I said it's not quite the same .. but very similar.

So, thankyou .. it helped me understand my own illness.

Anyway, off to bed now .. I meditated for a while over me hot chocolate because I thought I'd be late for bed. More when I wake up, huh.