Frequently Asked Questions
Epidermolysis Bullosa is a rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation. Even the slight slightest touch or friction can cause the skin to break resulting in painful blisters and open wounds.
The skin is made up of a number of different layers. The outer is called the epidermis; the inner layers are the dermis. “Bullosa” is the name for a blister and “lysis” means breakdown. Simply put, Epidermolysis Bullosa means the breakdown and blistering of the outer skin.
Hunter’s Wish in a non profit organization that focuses on raising awareness about Epidermolysis Bullosa, EB and raising funds for research to bring us closer to a cure.
Recessive Dystrophic Epidermolysis Bullosa (RDEB)
In the United States, about 1 in 20,000 babies are born with some type of EB.
To date, there is no cure for EB only wound care treatment and pain management. But there is hope in research being done.
Each EB patient is treated differently . Daily routines are wound care, bandaging and pain management . The most severe forms of EB require meticulous care similar to that given to burn patients.
A few medications we have tried are Imiquimod cream, Mupirocin ointment, Fluocinonide cream, Cordran Tape, Zofran, Zonalon cream, Neurontin, Protopic ointment, Ketoconazole cream, Naltrexone, Hydroxyzine, Clobetasol ointment, Triamcinolone cream and ointment, Doxepin, Urea, Mirtazapine, Atopiclair cream, Thalidomide, Emend, Prednisone, Cellcept and Cyclosporine.
- Hunter has recieved Narrow Band UVB Phototherapy, (NB-UVB) 2011-2012
- Hunter has participated in Grand Rounds. 2011, 2012
- Hunter has had Electromyography, EMG measures the electrical activity of the muscles. Nerve conduction studies, (NCS) measure the health of the nerve being tested. This involves a small current on the skin. After 4 treatments and being removed from the medication his sural sensory amplitude has decresed by 50%. 2012
- Hunter had surgery on EB lesions on his left arm on Nov. 13, 2012
No. EB is an inherited genetic disease, not a contagious one.
No, Hunter’s EB is a milder. Although he is getting more lesions his case is life altering not life threatening.