"These, in my opinion are some of the best, and most honest images I have ever taken.”
Maya
The last few months have been extremely challenging as the condition of my skin as deteriorated massively. From 18 months old when I was diagnosed with epidermolysis bullosa to earlier this year I was able to live an almost normal life despite my skin, it was easy to hide and easy to manage. But earlier this year it started getting rapidly worse and I am now able to do less of the things I once could. My confidence and self esteem is almost non existent most of the time. So much of my day is spent managing my skin or being in pain from it. But now more than ever I need to remind myself that I am still the same old me. I am still beautiful and this condition that I will be lumbered with for the rest of my life, does not define me as a person. It will always be a huge part of my life but i will never let me take over my life. EB is so rare that there is so little awareness for it and in a lot of cases it is life threatening so I'm posting this not only for me but for everyone suffering. Because of the lack of awareness, the funding towards trials and research is so limited that I probably will never access to a cure, as much as that upsets me, I just hope that future children will get access to more treatment and a possible cure. If anyone cares enough to find out more about EB, google search "Debra eb".
Isabella
"Today I am a little angry at the world. I'm angry that it's been 2 years and 2 days and I still don't feel complete. I have been cut up and then stitched and stapled, but today I don't feel whole. I'm angry that my memories and dreams of what happened blend together with the present. It's 2 years and 2 days and today I don't feel okay. But I will. "
Mercy
“My scars are from a fire related to domestic abuse. I got burnt at the age of 29, and it’s been a difficult journey coming to terms with it. The comfort I take from my scars is they make me who I am today. I call them my most precious, and expensive piece of jewellery I own. I have survived and if having my picture taken, and exposing my scars can help anyone else then that’s good for me!.”
Agnes
"In 1997 at the age of 7 i survived a gas explosion. I have undergone 27 reconstructive surgeries. I have always been comfortable with my scars, to me they are beautiful and they tell you different stories. They are special.”
Art By: Sophie Mayanne.
Thank you for reading!
