I have a new patient and they have a disorder that is right up my alley- Epidermolysis Bullosa. I am ten years out from that life- a lifetime ago, I worked with these patients full time...overtime.
EB was my calling, and I worked with families as the DebRA nurse, answering questions and providing emotional support. I made a difference every day. But the disease is the disease and while there are more and better treatments now, there is still no cure.
I will pray for this child, and all the EB children in my past- that they are doing well and have what they need... for as long as they have...
But I am reminded of why I stepped away. The pain, the anguish and the grief... It's like I never left.
