A company that makes ultra-low-friction fabric for people with burn injuries, amputations and pressure sores has launched a clothing line for children with a painful skin condition.
Known as “butterfly children,” these patients have epidermolysis bullosa (EB), a rare genetic disorder in which their bodies do not produce a protein that would enable the skin to adhere to itself. Their extremely fragile skin blisters and tears from minor friction or trauma, making it seem as fragile as the wings of a butterfly.
When officials with low-friction fabric maker Tamarack Habilitation Technologies, Inc. (Blaine, Minn.) learned of a local child who had EB in 2015, they began working with the little girl and her family to develop clothing that would protect her knees, elbows and armpits, all high-friction areas.
Tamarack made prototypes of sitting pads and clothing for the Minnesota girl so it could learn what would be helpful to her. Then it began to work with children who were being treated for EB at the University of Minnesota’s Pediatric Blood and Marrow Transplant Center in Minneapolis, which attracts EB patients nationally and internationally.
“We wanted some professional feedback as well as from parents and families, too,” said Caroline Portoghese, senior clinical and education specialist at Tamarack.
One family whose now-4-1/2-year-old son has a mild version of EB agreed to try out some prototypes of long-sleeve shirts and long pants. Nina Schuppler said that once he started wearing GlideWear, her son scooted across the kitchen floor on his knees and lay in bed with his elbows propped on the mattress to read a book – both firsts. The little boy has been happily wearing the prototype clothing for a year.
“Before, he had wounds every week and really severe wounds, especially on his knees and elbows,” Schuppler said. “When we started using GlideWear, the wounds reduced and also the severity. He still gets wounds but they are more superficial.” His elbows wounds are “drastically reduced,” she added.
Now her son is an active preschooler who wants to do whatever the other kids are doing. He wears GlideWear’s long-sleeve shirts and long pants even in summer to protect his skin, but doesn’t mind. “He never says, ‘I don’t want to wear it,’” Schuppler said.
About 200 children a year are born with EB, according to the Dystrophic Epidermolysis Bullosa Research Association of America (debra of America), which calls EB “the worst disease you’ve never heard of.” Children with the most severe forms of EB wear bandaging constantly. In addition to affecting the skin, the disease can also seriously harm internal organs and bodily systems. About 20,000 people in the U.S. have EB, and many die before reaching age 30.
“The majority of clothing options for patients that are applied on top of the dressings are usually self-created by the family to find what works best,” said Christen Ebens, MD, clinical director of the EB clinic at the University of Minnesota. “It’s a challenge, for sure.”
The clinic also uses GlideWear pillowcases and operating room pads for their EB patients, according to Gretchen Lilja, its nurse coordinator. Some children with severe EB may receive a bone marrow transplant to lessen the severity of the disease.
“We love Tamarack. We love everything about the GlideWear,” Lilja said. “They have been phenomenal in trying to make products for our patients.”
If the clinic staff sees a patient they believe will benefit from the clothing, they refer the family to Portoghese. Tamarack readily makes adjustments to clothing that isn’t fitting properly or working as expected, Lilja added.
Tamarack’s GlideWear fabric is a patented, nylon-spandex blend with a 0.2% coefficient of friction, according to the company. It is designed with two layers to protect skin by gliding smoothly against itself, absorbing the harmful friction and shear that can damage skin, even when wet. GlideWear is widely used in medical and sports applications where the skin is at risk for injury caused by friction, shear, rubbing, and breakdown.
Tamarack launched its GlideWear retail line for children at the recent debra Care Conference in Chandler, Ariz. The short- and long-sleeve shirts, capris and long pants are available in sizes 3T to 6. The company will decide whether to expand the size range depending on demand. It also makes floor pads for babies and smaller children.
Although all products for EB patients are covered under the company’s current FDA listing, Tamarack also followed the Consumer Product Safety Commission’s guidelines for recommended and required third-party testing and certified in written Children’s Product Certificates that its products comply with applicable children’s product safety rules.
Schuppler is glad to have had GlideWear available for her son.
“If you have a child who has a rare disease, you try everything out there to help your child,” she said. “I’m just really thrilled that other EB kids will have the opportunity to wear it and to just get a little bit of relief.”