Skin
The skin may be pale and transparent with veins visible and there is often increased pigmentation around the eyes or on the elbows, palms, and soles of the feet.
During the summer months a high factor sun block should be used at all times, preferably one for sensitive skin. However, a heavy sun cream may make the individual hot, so a lighter cream may be more suitable. Cotton clothes next to the skin and cotton bedding are advisable. In the Ectodermal Syndrome known as Hay-Wells (AEC), the skin is more severely affected, such that infants may present with chronic wounds complicated by life-threatening infections requiring the care of a Doctor to relieve discomfort, prevent secondary infection, and minimise scarring. Many families in this situation have tried various products but have found that persisting with saltwater bathing is the best treatment.
Please go to our article library for more help and information regarding skin.“Working Together at last for Rare Diseases: ERN Skin”