EB (Epidermolysis Bullosa ) is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering—inside and outside the body. Today there is no cure. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and often early death. There are many patients who are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal.
The only treatment for EB is daily wound care and bandaging. The daily routine is a grueling, multi-faceted daily regimen. Caregivers, often parents or family members of EB children, must work in tandem with medical professionals to determine and administer different treatment methods to care for EB wounds.
With skin as fragile as a butterfly wing, EB patients are dubbed “Butterfly Children”. On the outside physical wounds prevent them from normal daily activities enjoyed by other children. On the inside, their dreams are the same as any child who loves, plays, learns and grows despite the pain and impediment caused by their disease. With the programs and services of Debra of
, EB’s Butterfly Children and their families find
the support they so desperately need. Debra of America works to ensure that a life of struggle is also a
life of hope for the 1 out of every 50,000 live births in the America affected by EB. United States
The above description of this horrible disease came from www.debra.org.
|A wonderful organization|
I first stumbled upon this disease through a Facebook page of another mommy. I followed the story of one little boy, Tripp, who, as all children with EB, was born with this terrible disease. Tripp passed away about a month ago but I have since created a FB page dedicated to EB. The page is Helping Children with EB. Currenty, there is NO CURE for the disease and all the children who suffer have to go through extreme pain every single day. It breaks my heart to see every single video of these children. They are such sweet angels who do not deserve the pain and suffering they are going through. Yet, they seem to have more strength in them and patience that many adults I know, including myself.
If you’d like please visit http://randycourtneytripproth.blogspot.com/ for more information on Tripp’s story. It is a truly amazing story of a Mom who dedicated herself to her son.
Please let me know if you have ever come in touch with this disease. I would like to begin to raise fund for the research and treatment for those children. You can also leave me a comment and I will post additional sites that are dedicated to this disease.