EB Awareness Week 2014
This week, from the 25th to the 31st October, is EB (Epidermolysis Bullosa) Awareness Week.
Most of you who are friends with me, offline and online, probably know what my skin disease is called, some of you might even know what causes it, but to play my part in raising awareness, I’ve decided to write a blog post explaining not just EB, but my life with it, and the treatments being worked on that might allow me, and most importantly babies and children with EB, to know what life is like without it.
As part of me trying to raise awareness, you can ask me any questions that you have about anything at all relating to EB, how it affects my life (short and long term), my bandages, what’s underneath them, the worst parts of EB, the “best” parts (what could be known as “EB perks”, as Fault in our Stars talks of “cancer perks” I suppose, like which bands I’ve met or how many times I’ve ridden a theme park ride without having get off and queue again (and from which ride did my friend Angie nail an obnoxious, insult-hurling, teen in a queue between the eyes with a pack of chewing gum that he’d thrown in the first place? That’s an EB perk for ya. An hilarious one, at that!), what I wish I could do, what I’m most glad I can do, what surgeries I’ve had and why, my ‘bucket list’…anything!!!! Even if it’s saucy, very personal, emotional, if you ask, I will tell*. You can ask ‘anonymously’ in that I won’t post your name, and you can ask after reading the blog(s); I’ll update them with my answers.
If I talk about friends, particularly those who have passed away, I will change their names if I can’t ask the person or their parents for permission to tell the story first. So don’t think I’ve just forgotten their names! Even I’m not that porridge brained yet.
I *think* that’s all the whys and whatnot, so I’ll make this the first part, with all the technicalities, so I’ll post this, then get down to the blister business!
*If it’s a science-y question, I’ll answer the best I can, probably with thanks to Google or, hopefully, and far better, with knowledge imparted by lovely researchers and/or doctors, EB nurses et al.