Any info about this skin disorder?

My friend has a one and a half year old daughter with a skin disorder from birth. Her diagnosis is: -erythodermia ichtyoziformis bullosa Her skin is degenerated to the degree that blisters/boils form all over her body, and on falling off, leave exposed flesh. On the other hand, skin around her toe nails is extremely tough, with thick skin layers forming on top of each other, making it nearly impossible to cut with scissors. She only wears cotton, her skin needs to be moisturised very often and open wounds need to be desinfected with alcohol. On touch, her skin comes off very easily making new blisters. Her parents do not expose her even to mildly warm temperatures because sweating affects her very badly. In summer they usually go to mountains to avoid high heat. In Slovakia doctors don't have any idea what to do with this condition or how to help the child. Usually medical interference only does her harm. If you have any information about a possible cure, rehabilitation, herbs, or any other comments positive or negative that could help us and shed light on this rare disease please write back. Thank you very much. Goran Tweet