Nine-month-old Kaysie Norton is likely to outgrow her simplex strain of epidermolysis bullosa, a disabling and life-threatening skin disease. But until then, her mother, Christy, will keep her skin protected with soft bandages and a new line of clothing she has designed for infants with the illness.
Kaysie's Clothing Co. was started with one goal in mind; to make clothing that is completely non-irritating to children with EB. For many sufferers of EB, even the slightest movement or friction can cause new blisters to form on their skin. The tug of a collar around the neck, pinching elastic, or a seam that rubs, causes tremendous discomfort and sores."I didn't want people to go through what I went through," Norton said. "I put her (Kaysie) in clothes and the seams were so hard. . . I started frantically sewing a wrap-around gown for her. From that experience I am trying to help other children."
In its simplest form, EB causes blistering of the outer layer of skin, causing mild irritation and usually in just one area of the body. However, junctional EB goesdeeper between the epidermis and dermis. The connecting fibrils between the layers of skin are defective, causing blisters and wounds below the surface. In its most deadly form, even a cough or a blink of the eye can cause blistering.
In just the few months she has been sewing, she has become the personal tailor for 10 children throughout the United States, and receives numerous calls from adult sufferers seeking clothing that is less harmful to their open wounds and blisters.
"Right now I'm making Halloween costumes," Norton said."The other day someone called and said, `I need a coat.' "
More than 100,000 people nationally suffer from one of the numerous forms of EB; 20 families in Utah are affected. The greatest sufferers from EB are outside the United States. Although not proven as a cause, it has been noted that many EB sufferers world wide and their families live around large bodies of polluted water. In an effort to financially boost the EB research project, Nu Skin, International has donated $70,000 to the EB Medical Research Foundation. Through its Force for Good campaign, Nu Skin has designated 25 cents from the sale of each container of Glacial Marine Mud (one of the company's top selling products) go directly to the EB Project at Stanford University Medical School, through the foundation.
Dr. Alfred Lane, chairman of the Department of Dermatology at the Stanford University School of Medicine, has four full time researchers involved in genetic studies of the disease. Doctors are looking at the proteins in the skin which affects the way skin attaches and holds together.
"We are looking at the most severe types, the junctional type and dystrophic type," Lane said. Currently they are close to finding a way of developing good genes, placing them correctly, and seeing how they interact with cells.
Lane believes within the next three years, Stanford scientists will be treating the first EB children with gene therapy. Most of their financial support is coming from the National Institute of Health, the foundation, Nu Skin, and people like the Nortons. All profits from Kaysie's Clothing Company are being donated to the research.
Locally, a benefit for the foundation will be held at 7:30 p.m. Thursday, Nov. 7, at the Salt Lake Art Center. "Women Helping Women," an evening with Lola Van Wagenen Redford will include remarks on Redford's doctoral dissertation about the Utah suffrage movement a century ago, and focus on the relationships between Utah women of the time. Tickets can be purchased for $17 at Smith Tix, or for $15 from Doloris Nelson Campbell, 374-5256.
For more information about Kaysie's Clothing call 229-2835. To find out more about EB and the research foundation, call (510) 530-9600, or write to 130 Sandringham Road, Piedmont, CA 94611.