Lizzy Hendrickson, a 3-year old girl from Phoenix Arizona, can’t be touched or cuddled by her parents because of a rare condition in which her skin will break out in blisters.
Lizzy Hendrickson has Epidermolysis Bullosa Simplex or also known as Butterfly Disease where the skin is so fragile it will instantly break out in painful blisters with the slightest touch. The rare skin condition is referred to as the Butterfly Disease because a person’s skin is so delicate it tears as easily as an insect’s wing.
People diagnosed with epidermolysis bullosa, or EB, call it “the worst disease you’ve never heard of,” partly because it’s so rare. The condition is estimated to affect 1 in about 50,000 live births, making it about as uncommon as conjoined twins.
“Usually their first blistering experience is that trip down the birth canal,” said Dr. Ronald Hansen, chief of dermatology at Phoenix Children’s Hospital, where Lizzy was transferred a few hours after birth. “At that point, you know you’ve got a problem.”
EB patients get friction blisters if they come in contact with anything, from merely being held in some cases. “The simplest touch, like this” — Hansen barely brushes his arm — “would cause a blister.”
While doctors knew something was wrong once Lizzy was born, it wasn’t until almost two months after the biopsy revealed what type of EB Lizzy had, but she appeared to have the simplex version, one of the less severe types.
The top half of Lizzy’s closet is stuffed with medical paraphernalia: There are boxes of both “Mepilex light” and “Mepilex transfer,” two types of silicone foam bandages used to dress wounds. There are rolls of Surgilast elastic netting, used to secure the bandages to her legs. On her dresser is an enormous jar of Aquaphor ointment, which the company distributes free to all EB families.
Changing the dressings on her wounds is a twice-daily task. Even with the mildest forms of EB, large areas of skin need to be bandaged at all times. For Lizzy, her legs are the most sensitive area. There is the constant fear of tearing the skin, and with that the fear of infection.
Although, Lizzy has never taken a shower because the falling water would make her skin break out into blisters. So it’s all baths for her. Her parents say, “it’s a drawn-out process every other night to coax her into the bathtub, even as toys and other dolls float in the water as incentives.”
Lizzy now changes her own dressings. “She’s very much a little captain. She’s in charge. She’s a very savvy little girl,” Dr Hansen says. “But we kind of always tell (EB) parents, like, this should be their computer kid. She can’t be the soccer kid, because she just can’t stand any kind of friction. It causes blisters every time she touches anything.”
“Having said that, Lizzy will go off and kick a soccer ball. She’s going to be a rambunctious, active girl. But she pays for it. Every time. She pays for it with blisters,” he adds.
There are drug trials in Europe for EB, but the disease is so rare and little-known that raising funds, is an issue. Phoenix Children’s Hospital has one of only four dedicated EB clinics in the country.
The Hendrickson’s feel confident a cure is going to happen in Lizzy’s lifetime, perhaps by the time she goes to college. They also say they are convinced she’ll get married and have her own kids someday.
Phoenix girl born delicate skin from ‘butterfly disease’
The little girl who can’t be cuddled is living with ‘butterfly disease’ a genetic condition which means her skin is so fragile it breaks at every touch.
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