
Fortunately for Ileana and other children suffering from EB, many efforts are being made to treat this horrible disease. Doctors have been working with gene therapy, stem-cell therapy, and bone marrow transplants. Recently, $11.7 million dollars was granted to Stanford to further develop the stem-cell therapy. Their goal is to have a clinical trial by 2014. It is known that this disease can claim children's lives before they reach adulthood and therefore this treatment is needed as soon as possible.
Work is being done to "transform ordinary skin cells into all-purpose stem cells." These new stem cells will hold the collagen and are hoped to give the gene to those suffering from EB. Work on skin grafting is also being done to replace the thin, fragile skin with thicker skin.
The most recently developed treatment is called reprogramming, however the trials are too dangerous for humans at this point and there is some contreversy surrounding the treatment. Another contreversial method includes the bone marrow transplants. These transplants were done during a trial on seven EB and unfortunately, two died. Doctors have differing opinions on the treatment. Some believe the risks are necessary in order to save more people in the long run, while other believe other efforts should be made to treat the disease without risking the lives of the children.
This article is somewhat like our current unit on polio. Both often affect children and cause those afflicted trouble walking and moving around. I really enjoyed reading this article because there are so many diseases in the world that go unnoticed. I am happy to know that EB is getting attention in the medical world and that hopefully there will be a cure soon and that no more children will have to die. It was very emotional reading Ileana's story because she is only 15 and yet she has to deal with this painful disease everyday. It really makes you re-evaluate the little things you complain about on a daily basis. Just be happy you aren't having to wrap yourself in gauze everyday, or worrying about the possibility of not making it to adulthood.