Saturday, October 31, 2009

Guest Blogger - Catharina De Swardt - Butterfly Children


Katherine is a spunky eight-year-old. She does what every child her age does. She runs outside, climbs trees she can’t get down from, and enjoys having her friends over to her house. The only difference is that most of the time Katherine is wrapped in bandages. Almost her entire body is covered with bandages.

Katherine has Epidermolysis Bullosa (EB). It is a genetic skin disorder that causes blisters on the skin. These wounds are very similar to third-degree burn wounds.

Katherine was five weeks old when her mother spotted a blister on her hand. The blister got bigger and bigger until it burst.

The blisters are very painful, even with the slightest touch. Katherine says that when she meets someone for the first time, she tells them: “Be careful, I am fragile.” She wants people to understand they must be gentle around her.

EB is a very rare disease and affects both boys and girls. About 1 out of every 50,000 children are born with it. There are different types of EB, ranging from mild to severe.

Katherine suffers from Recessive Dystrophic EB. It gets worse the older Katherine gets.

“Sometimes I just want to carry a sign above my head saying ‘I’ve got EB’ so people will stop asking. I want to carry a video explaining to people what it is,” Katherine says.

Because their skin is so fragile, children affected by the disorder are often referred to as “Butterfly Children.”

Epidermolysis Bullosa is a chronic disease. There is no cure for it, and the only thing you can do is make the patient comfortable and provide good wound care.

Children suffering from this disease need a lot of care. Bandages need to be replaced daily. It is very important to keep the blisters from getting infected and prevent friction on the skin.

There are a lot of specialized bandages and ointments designed to improve wound care for EB patients. Katherine and her mother spend two to three hours every day dressing her wounds.

Very often the healing wounds itch, and kids must refrain from scratching themselves, as it will only make the skin worse.

In more severe cases the disease not only affects the outer layers of the skin but also the eyes, intestines, and esophagus. Children with EB normally have to be on a special diet. Sometimes they can only drink liquids because it hurts too much to swallow.

The important thing to know about EB is that it is not contagious. Despite the physical problems, there is no impairment of intelligence. Many children suffering from EB can still have normal, active lives.

Katherine loves to read, and her favorite subjects are math and science. She is in the gifted program for languages and social studies at her school.

Katherine is very fortunate that she does not have web fingers, like some children with EB do. She plays the piano and performs recitals for patients at the University of Texas M. D. Anderson Cancer Center in Houston.

Katherine loves to dance. She dances competitively and won a scholarship in her jazz class to attend the Jump Convention. Katherine says it doesn’t matter how much it hurts as long as she can keep on dancing.

If you would like to learn more about EB, visit http://www.debra.org/.







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