Today I heard on the car radio that it is Butterfly Day for kids suffering from E.B. It was the first time I had heard of this disease and so I looked at their website here and in the United States [be prepared for disturbing pictures]. I was appalled at what small children go through with Epidermolysis Bullosa as their skin blisters horrendously and causes them infections and tremendous pain.This is a rare genetic disorder and affects all nationalities.
The wounds vary in severity and although they resemble burns, they don’t heal as burns do. The child with E.B. cannot ride a bike, skate, or participate in sports because normal play causes chronic sores which are sometimes covering 75 percent of the body and can be life threatening. These children are confined to a diet of only liquids or soft food to cope with blistering and scarring which occur in the mouth and esophagus.
Their fingers and toes can fuse due to scarring, leaving deformities affecting their ability to function. Their lives can involve being constantly admitted to hospitals for wound treatment, blood transfusions, biopsies and surgeries. They often have sight problems because their eyes blister. Chronic anemia is another symptom and this reduces energy and retards growth. Life beyond 30 years is not expected.
I found that in Australia there are attempts to raise money and support services for children who suffer with E.B. and for their families. So I hope that I can raise awareness about this devastating illness through my website to help their fundraising and make their plight easier.
I am sure that you too will find it as heartbreaking as I did when you visit the E.B. websites.