E.B. (Epidermolysis Bullosa)

DebRA Queensland logo, Butterfly DayIn Australia you can help by reaching the support people for E.B (Epidermolysis Bullosa) at DebRA Queensland. As a result of my post about Butterfly Day and E.B. there was a comment by Gena which I believe will help the E.B. campaign, so I’m including her comment in full here. Hopefully this will inspire people to become active in Gena’s work too. Children especially suffer such pain and life threatening illnesses because of Epidermolysis Bullosa so please consider pledging your help.

Comment by Gena:

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: 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 www.house.gov or 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


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