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.
Hello! I receive “google alerts” for anything about EB, and your blog arrived in my alert today.
I just wanted to write and say “THANK YOU!” for spreading awareness about EB! My Mom suffered from Recessive Dystrophic EB, Hallopeau-Siemens subtype. She was a marvelous woman, and a warm and caring mother to me and my two siblings. She is one of the few with her severe subtype to have children, and we are all EB-free. She lived to the age of 65, and serves as an inspiration to others with EB because of her long life and courage in the face of this disease. She endured many infections from chronic wounds, had many surgeries to improve her mittened hands, developed squamous cell carcinoma which resulted in amputation of an arm and a leg, and yet she loved life and was in all ways a child of God. I wrote an article after her death for the DebRA organization, which you can view here:
http://www.thedenslaws.com/personalstories.html
In the U.S., I am working with volunteers to pass a Bill for National EB Awareness Week, Bill H.RES.335. The companion Senate Bill, S.RES.180, has already passed. If one of your readers knows folks in the U.S., they can write, fax, email or phone the House Majority Leader, Speaker of the House, and Majority Whip, and ask them to bring this Bill to a vote under the 109th Congress, before they finish in December. They can ask the same of their own Congressperson, and they can get all contact information at http://www.house.gov or http://www.congress.gov.
I also work with DebRA International, helping people in countries to find resources. Currently, I’m working with a family of four siblings in their 20’s in Iraq who have no bandages or wound care treatment, to go to Israel to be diagnosed and receive instruction on bandaging, and a couple in Pakistan with a 2-year-old son – all have a more severe subtype of EB. There is just not enough help for these people, and spreading awareness as you have done is a great gift to our community!
Thanks for the opportunity to leave a comment!
Gratefully, Gena Gruschovnik