Search

“Your baby is suffering from a genetic skin disorder, her skin is too fragile, she'll probably not make it over the next few days.” Shock and bewilderment summed up our family's emotions. Now, 10 years later, although not cured, our niece Myra is doing quite well, and we can reflect on our experiences. As medical students we are painfully aware of the different priorities of doctors and patients; as second generation members of an immigrant Pakistani family we have struggled to reconcile traditional beliefs with Western medicine. Myra suffers from recessive dystrophic epidermolysis bullosa (EB), a congenital skin disorder characterised by blistering of skin and mucous membranes on even mild mechanical trauma. When she was born we had not heard of EB. The first few weeks after discharge from hospital were particularly stressful. Although the nursing staff had encouraged us to handle, feed, and bandage her, being away from the hospital setting gave us great cause for anxiety. What would we do if something happened? It was no comfort to find that medical staff seemed to share our ignorance. Nobody seemed to know what care entailed apart from careful handling to prevent blisters from forming, or what to do about blisters once they had appeared. We were advised to cover them with dressings and leave them …