RESEARCH PROCESS Part 1: At the end of my research I would like to know about all areas of epidermolysis bullosa. This includes the causes, symptoms, daily challenges, and treatments. This will help me and others in the medical field because they will be able to develop a better understanding of the disease and will be able to possibly find treatments or even cures for the disease. By knowing about epidermolysis bullosa I will be more aware of how fortunate I am and others are because we aren’t faced with this disease. I will also be more knowledgeable and I can try to help find an effective treatment with the proper research. I want to know as much as possible so I can make a difference in the lives of patients with epidermolysis bullosa.
Part 2: I previously learned about the disease known as epidermolysis bullosa as I was looking for rare skin disorders on the internet. This area of study fascinates me, and I was trying to develop an understanding of as many skin diseases as possible. While looking, I found out about epidermolysis bullosa and the effect that it has on the patient. It is a rare skin disorder that causes the skin to blister with the slightest touch. It can affect the entire body and can even affect the throat. This causes an immense amount of pain as well as other side effects. This disease also alters their lives because they have to adjust by making sure that they don’t cause any friction on the skin. Careful precautions have to be taken, and it makes simple tasks such as taking a bath into a very complicated procedure. As of right now, I do not know of any effective treatments and I am unaware if the doctors have performed any procedures that can make this disease more comfortable for the patient.
Part 3: In the hunt for information I scoured through many websites and read a lot of stories of people with Epidermolysis Bullosa. I did this so I could understand the severity of the disease and so I could put myself in their shoes. For the research aspect of the search, I made sure to find the studies that answered my research question best. I also made sure to discover all aspects of the disease such as the symptoms, current treatments, research, and other facts about the disease. I looked through many websites, watched many videos, and clicked through many pictures during this investigation. I also conducted an interview with the DEBRA organization and asked them several general questions about the disease and how to see a change in the effectiveness of the treatments. There is bias in the research found but in this case, it only helps the research because they are the people that understand how harsh this disease is and are dedicated to finding better treatments.
Part 4: My paragraphs are organized into sections according to the topic. Each paragraph goes into detail according to the topic and addresses the research question. The research is answered throughout the website as all of it is geared to answering the research question. Because of my research I have a new understanding of Epidermolysis Bullosa and I understand all aspects of the disease. I know which treatments are more effective than others and which treatments could potentially be tweaked in order to make a new and improved treatment that is more effective. STATISTICS
200 children a year are born with EB in the United States
EB is classified as having extremely fragile skin that tears and blisters easily with the slightest amount of friction
Internal organs and body systems can be affected by EB
Most children live to the age of 30 at the most because of the harmful effects
Side effects of EB are anemia, dysphagia, malnourishment, fusion of fingers and toes, muscular dystrophy, cardiomyopathy, renal insufficiency, and increased risk of cancer
EB can result from a mutation in 1 of the 18 genes that do not allow the body to produce an essential protein or unable to produce a working form of the protein
For more information on Epidermolysis Bullosa go to http://www.debra.org/
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