Epidermolysis bullosa, a genetic disease that affects weaken and destroy the child since birth. EB is very rare – the child has one chance in 50,000 is born with EB – EB and not ethnicity or gender.
EB is technically defined as a group of diseases characterized by blister formation after minor trauma to the skin. In practice, a child suffering from EB is not an essential protein that binds to the layers of skin together. These proteins act as “velcro”, attached to another layer of the skin. Without the “Velcro”, is now the boy, his skin slides also cut the bulbs that causes severe pain and disability, and in many cases, early death. A child with a severe form of EB can have a cumulative risk of 60% of deaths in 15 years and almost 100% chance of developing skin cancer pain aggressive and deadly in its life is shortened.
There are three major subtypes of EB – simple, union and dystrophic and within each type there are different subgroups. The difference is the speed with which a bubble is formed in the skin and certain proteins are missing or disturbed.
Living with EB
To say that the impact of EB every aspect of a child’s life is dirty
underestimated.
The skin is the largest organ in the body. Among the most important, the skin is the first line of defense in protecting the body against injury and infection. Everything we do in life affects our skin – walking, eating, playing, sitting, writing, hugging, sleeping – and the list goes on.
For children suffering from EB, all aspects of your life has always been overshadowed by this terrible disease. These children are often born lost large areas of skin, leaving open wounds that never heal, walking and standing are affected from time to time because the toes to fuse due to injuries, the simple joy of holding a pencil to draw an impossible, because the fingers of the fuses and contract, altering their young hands in gloves.
During a typical day, a child with EB was given a special bath and dressing change. Given the large area of skin can lose the body, such as children, swimming is a very painful experience. Dressing changes can last from 30 minutes to several hours and bands can cost families up to $ 14,000 a month by surprise.
EB treatment and care
Jackson Gabriel Silver Foundation was founded with a mission to find treatments and a cure for epidermolysis bullosa (“EB”), a group of blistering diseases are incurable and devastating affects children from birth.
JGSF Silver family started in 2010 to find a cure for her son, Jackson, and all children who suffer from this terrible disease.
By funding scientific research, JGSF can help children with EB who have no essential proteins that act like Velcro, link layers of the skin together. When children move, they slide off the skin blisters and shears off, causing pain, disability and, in many cases, early death.
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