Thursday, June 26, 2014

Butterfly Children

The sad story of Sarah and Joshua Thurmond started when doctors diagnosed them with Epidermolysis bullosa (EB), another rare genetic disorder that cause the skin to be extremely fragile. Erosions and blisters occur because the skin layers lack a fibrous protein that is responsible for anchoring filaments to underlying tissues.

Joshua suffers from one of the most severe types of EB, Epidermolysis bullosa dystrophica. Unfortunately, his sister too, but she passed away on Oct. 8, 2009. The disease took her at the age of 20. According to medical studies, people born with EB have a life expectancy of about 30, maximum 40 years.

“Cotton Wool Babies”, “Crystal Skin Children” or “Butterfly Children” are the terms often used to describe the fragile condition of younger patients. Their skin is as fragile as a butterfly’s wings. The slightest rub can cause painful wounds. Brave Sarah and Joshua learned to live with extreme and constant pain. Special bandages help lessen the pain and prevent infections, but currently, there is no cure for EB.

No comments: