Life hands us raw deals, and we can either laugh or cry, and while I am not sitting here telling you I’ve never cried, nowadays I try my best to enjoy life, enjoy the little things, enjoy the moment, take it all in.
I don’t intend to host a pity party by sharing my pain and struggles — by sharing, I think I help open minds to what Epidermolysis Bullosa looks like.
The problem with the scarred areas is that they are very fragile. There is a big difference in how much pressure I can put on areas of his skin that have never been wounded and chronic ones.
Those that have either Recessive Dystrophic EB or Junctional Herlitz EB bear the unimaginable cross of knowing that not only they have to constantly suffer, but eventually the condition will take their life, many times sooner rather than later.
I’ve read many books that dance around the subject of survival in many ways, which help me a great deal and I find fascinating, from biographies to true stories of people that literally survived against all odds…
There is so much suffering in this world and all we need is kindness, love, and some badass cure for EB.
