Epidermolysis Bullosa is a group of extremely rare skin disease that can cause the skin to become fragile and form blisters on top of its surface. The disease commonly known as EB usually diagnosed in children. This disease comes in many different types like epidermolysis bullosa simplex (EBS), which causes blisters to form on the outer layer of the skin, dystrophic epidermolysis bullosa(DEB) allows blisters to form on both the outer and inner parts of the skin, and junctional epidermolysis bullosa (JEB) which can cause “blisters to form where the outer and inner layers meet”. Each type contains its own sets of problems and treatments.
Epidermolysis bullosa is caused by a genetic defect that is almost always hereditary in family members. the skin becomes soft and is skeptical to blisters and diseases because it has no protection. It is because the defect is effecting the epidermis and the dermis. Epidermis is the outside layer of the human skin and acts as a barrier that protects the body from naturally bodily harm like chemicals, viruses, and other pathogens that could do harm to your body. The Dermis is the thickest layer that lies underneath the epidermis, it is made up of fibrous and elastic tissue that provides strength and flexibility to the skin.
There are many complications that come with having Epidermolysis Bullosa, it truly prevents them from enjoying their lives. There are four dangerous problems that comes with the disability. One complications is Sepsis, which occur when bacteria enters the blood and spreads through the body causing life threatening shock and failures in the organs. Another such complication that comes with this disease is the high risk of skin cancer; this happens because the skin cannot protect the body from harmful UVA ray lights. The most dangerous effects of this disease is the inability to create nutrition, this makes the body’s nutrients a serious part of living a healthy life and providing the body with energy and proper food “Problems like nutrition can also cause delayed wound healing and, in children, slowed growth”. Death is the most serious and dangerous result of having this disease. Infants born with a severe form of this disease, due to their lack of development survival risk of infection and loss of high body fluids which are essential to their survival. This disease come with countless problems and can affect you no matter how old you get so when dealing with this the person should always check with their doctor if anything abnormal appears or happens to them.
There are a couple ways to be diagnosed with EB, one such factor is having a Skin biopsy for the Immunofluorescent mapping, which allows a sample of the skin parts to be removed and identified using Laboratory equipment to test the sample and discovers if you have the protein needed for the skin to grow continuously. Another and much simpler test includes Genetic testing which uses a small blood sample to be taken and sent to the lab. The final way a person can determine if they have EB is using prenatal testing which looks into your family’s history to see if there’s a history of the disease. The disease is usually spread from the parent to the child o there is no way to prevent it from passing down through the parent’s gene.
The disease can spread through the parents when a child is born with the genes, there is no way to prevent the child from having the disease, but there are ways to prevent it like being gentle with your child so bruises don’t appear, keep the house nice and cool, and keep his skin moist. There is no way the body can protect the body from this affliction because there is no cure the body can make to harden the skin, so they have to just take care of their skin. Before the afflicted seeks medical assistance their can sometimes change the way that they are living so they can make their body more accepting to the condition but if this doesn’t work then you should seek the doctor’s advice. The first step in trying to control the disease is to get pain pills and medication to help control the pain and also stop infectious sepsis from taking over and making the body weak and feverish. Another option that you can take with dealing with EB is to seek surgical advice. Surgery consist of 4 option one being Widening the Esophagus so there can be relieve in the throat and make eating food easier. The other option would be to place a feeding tube in your body to help improve the nutrients allowed to be taken in. Grafting skin is the third option to consider when seeking surgical option, this option gets skin from a healthy part of your body to replace the extremely bruised part of it. The 4th and final option is to have an all-out surgery to correct the scarring that has infused with your body, so it cannot interfere with your body’s motors skills. There are future studies happing including Gene therapy, Bone Marrow transplants and even Cell-based replacement therapy with is the cause of the disease. These are the best ways to help soothe the pain of EB but it will be a long road to recover if you start one of these.
Epidermolysis bullosa is a lifelong disease that has basically no cure and filled with basically no cure. The prognosis of epidermolysis bullosa is fill with non-stop dependence of the body’s protein. “The amount of people who live to adulthood depends on the type of EB they are given one forms are mild and even improve with age, while others are so severe that a child is unlikely to live into adulthood”. Fortunately, the milder types of these disease is extremely common.
I have not seen a way that a person can be immunized against Epidermolysis bullosa it is a genetic disease that has not been a known about, so there is no cure. This disease is one of the worst unknown affliction a person can be forced to live with it will literally affect everything the person touches and prevent him from fully enjoying his life to the fullest, there should be a better way to live than to constantly have your doctors number on speed dial.
Every day people are coming up with new inventions that revolutionize the world so always fight for what you believe you deserve, and never give up on yourself or others when dealing with a disease like this.