Life with EB
"The Boy with the Butterfly Skin" is featured on CBS' "The Doctors"
John Hudson Dilgen shares what life with EB is like with Dr. Jim Sears
To say that EB impacts every aspect of a child’s life is a gross
Skin is the body’s largest organ. Among its most important functions, skin is the first line of defense to protect the body from trauma and infection. Everything we do in life impacts our skin – walking, eating, playing, sitting, writing, hugging, sleeping – the list goes on.
For children with EB, every aspect of their lives at every moment is overshadowed by this terrible disorder. These children are often born missing large areas of skin leaving gaping wounds that never heal; walking and standing are impaired over time because their toes become fused as the result of continuous injury; the simple joy of holding a crayon to draw becomes impossible because their fingers fuse and contract, turning their young hands into mittens.
During a typical day, a child with EB undergoes a special bath and bandage change. Given the large areas of skin that can be missing from such a child’s body, bathing is an extraordinarily painful experience. Bandage changes can last anywhere from 30 minutes to several hours and bandages can cost a family as much as an astounding $14,000 per month.
For a child with EB, the joyful act of participating in sports – such as Little League or youth soccer – is often out of the question due to the skin tears, blisters and scarring that would result. Falling down on the playground can remove all the skin from their little palms or produce blisters on their knees the size of oranges. For this reason, even playing with other children can be impossible.
Like all kids, children with EB rub their eyes when they are sleepy. Only in their case, rubbing their eyes can tear their eyelids and corneas, prohibiting these children from opening their eyes in the morning without suffering extreme pain.
An EB child’s meals consist mostly of soft foods and liquids. Eating is painful and sometimes impossible because the esophagus closes due to injury and scarring, which is only temporarily reprieved by a surgical procedure in which the esophagus is stretched open. When this solution stops working, a gastric feeding tube is placed in their small bellies in order to enable proper nutrition and hopefully stave off growth retardation and anemia.
Even the fundamental act of sleeping is extraordinarily difficult because of the level of pain and discomfort that these children experience 24 hours a day. A recent study determined that approximately 50% of children with severe EB are always in pain.
Unfortunately, this describes just a fraction of what these children experience, as it does not account for the social scrutiny and the stares that they receive by simply walking or being wheeled down the street. In its entirety, EB impacts vision, speech, nutrition, mobility and indeed every single aspect of a child’s life. Simply put, this disease prevents a child from just being a child.