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.
I thought this article was very interesting. I had never heard of this disease but it is something that caught my attention. This must be an awful disease since your skin protects you from infections. Also, I can imagine it being painful because your skin, with sensory nerves, is being ripped off of your body. Natalie, you did a great job putting this article in simple terms so that it was easy to understand. Also, I thought you did a good job connecting EB to Polio. It is good that something that is rather unknown is drawing attention and the medical world and that people are looking for treatments. I also thought this article related to the polio unit because with Salk's Field Trials only 1/2 of the participants were recieving the medicine, leaving them prone to paralysis. This was similar to the fact that the bone marrow transplants led to 2 deaths. Both of these treatments were very controversial. Overall, I thought this was a a very good, interesting article.
ReplyDeleteThis is a great article Natalie! I found it extremely interesting and frightening. I have never heard of this disease, and from what I have learned, it sounds dreadful. I could not imagine having skin that is paper thin, and having it get infected all the time. Our skin is vital to our survival in this world with so many infectious diseases always looking for another host to feed off of. Without a strong barrier to the outside world these children are at serious risk to disease. Also the fact that it would be so painful growing up with this disease. I am glad something is being done about this, and I hope that the day when it can be cured will come as soon as possible. It is a very interesting article.
ReplyDeleteThis article was very interesting. I have never heard of a disease like this and am surprised I haven't. It seems like it is very painful and also very unique. I agree with Natale saying that is like polio. Another similiarity that I noticed was that there are very few cases but probably a lot of money is being spent on it. I can’t even imagine having a child or even a friend who has to grow up with this disease. I’m very interested to know how people who are old deal with this disease or if people can grow out of it. I know that stem cell research is very controversial, but I think that scientist should pursue it more because not only can it help with cancer but it would also be able to help with this disease.
ReplyDeleteThis was a very interesting article! The skin is our protector from the outside world, and it was shocking to see that this disease disables our skin's function. I had nver heard of this disease, which is shocking because it is very scary. This disease slighly reminded me of the brittle bone disease, becuase the bones can be easily broken, just like the skin can be damaged in this disease. I found it interesting that Gracie brought up the point of how little known the disease is, but a lot of money is being spent on it. There are a lot of correlations between this disease and polio! I was really shocked to hear of such a horrible disease, because it seems to get no global attention. A quick question: do both parents need to be carriers of the gene, or is it a genetic mutation?
ReplyDeleteI also found this article to be very interesting and it was a great choice for an article. I greatly enjoyed reading it and I thought Natalie wrote a good summary. I had never heard of this disease before and it was shocking to read about it and think of the children who suffer with this disease. Our skin is what greatly protects us and it must be horrible if that is not functioning right. It is sad to think of these children being in constant pain and also being so prone to infection. I am glad to see that people are really working hard to find a cure for the disease and that a lot of money has been put into research.
ReplyDeleteI really liked this article, it always intresting to hear about the less common diseases in the world. I thought the summary was good and the fact that the article related to one girl's struggle made it easier to relate to and sympathise with the victims of this disease. It is always sad to see diseases that effect children. I couldnt even imagine having to wrap myself in gauze everyday just to kepp my skin on my body. Good job
ReplyDeleteI really liked this article, it always intresting to hear about the less common diseases in the world. I thought the summary was good and the fact that the article related to one girl's struggle made it easier to relate to and sympathise with the victims of this disease. It is always sad to see diseases that effect children. I couldnt even imagine having to wrap myself in gauze everyday just to kepp my skin on my body. Good job
ReplyDeleteI really liked reading about this disease, it was both shocking and startling to see how much the skin prevents and how brittle and susceptible to injury we would be without its protection. I had never heard of this disease before this article but I'm glad that i read this article because I think its important to know and learn about diseases that aren't always in the common eye's of media and people, as a citizen of the world it is important. Thank you Natalie great job with concise and simple explanation of a hard topic
ReplyDeleteNatalie, I really liked this article too. I remember reading it in the New York Times when it came out. Usually I don't read the newspaper but when an article about rare diseases is published, my mom always cuts it out for me because I love those type of things. Diseases and topics like this have always caught my attention because it is so interesting to learn about ailments that some people deal with everyday most people have no idea even exist.
ReplyDeleteThis article first grabbed my attention when l read the words "Epidermolysis bullosa" because I had never heard them before and I was curious to discover their meaning. When I continued on through the article, I learned a lot about what the disease is and possible cures scientists are researching to help deal with the disease. For this reason, I was able to connect this article back to the class. This has a lot to do with the Polio unit because during that time period as well, scientists were developing vaccines to help eradicate polio and many people very at first skeptical to try it on humans. This also goes along with what we were learning a while back about Dr. Boylston and his missions to inoculate people in colonial Boston against smallpox. In this situation as well, there were great debates over how ethical his procedure was. This article connects really well to the class and you did a great job of showing that, Natalie =]