For the past few weeks I have not called the dermatologist for Hope's biopsy report because quite honestly she was doing well and I was afraid that by them putting a label on her, that all of that would some how change. The thing is that we needed to get that information to know how to best care for Hope and know what to expect so today Howard called and we got her test results and to say I am slightly stunned would be an understatement.
Hope has Epidermolysis Bullosa. In fact Hope has Dystrophic Epidermolysis Bullosa. This means there is a defect in the collagen VII gene and the element that allows the layers of skin to stay together is compromised therefore any friction or trauma to the skin can cause blistering. This form of EB from what I have read is one of the most severe forms. Where the skin blisters there is scarring because of the depth of the wounds.
Like I said, Hope continues to do well, she is a great nurser, which as I understand is not typical of children with DEB, she is wearing normal diapers and normal clothes and being handled just as any other baby. She had gotten a couple of tiny little marks on her left hand but aside from that her skin looks great.
When the diagnosis was relayed to me by my sweet husband my initial reaction was to become discouraged and upset as many patients with this form of EB endure great pain and complications, it is also the form that I was afraid of because her chance of skin cancer would be GREAT.
The thing is that I have read all of the info and definitions of this disorder and really Hope doesn't fit. I have no idea what the future holds for our girl, but for now I am trying hard to remind myself every moment that fear sneaks back in that ONLY God can define her. Not this diagnosis, not a doctor, only God. He is the writer of her story and I will continue to pray for her and for God to heal her. Please join me in this prayer.
6 days ago