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".