Physicians know delivering bad news is part of the job. But a diagnosis of epidermolysis bullosa (EB) can be “terrifying,” says University of Minnesota pediatric oncologist Jakub Tolar, M.D., Ph.D.
EB causes the skin to slough off at the slightest touch. Wounds don’t heal, fingers fuse together, and eventually patients are unable to eat and are wheelchair bound.
Yet kids with EB, like Keric Boyd, 10, are beginning to thrive—thanks to a new treatment approach developed at the University. Six years ago, Tolar and John Wagner, M.D., director of the Division of Pediatric Blood and Marrow Transplantation, began pursuing a novel idea—treating the disease from the inside out with a blood and marrow transplant, rather than from the outside in with bandages and antibiotics.
“Funds from the University and Children’s Cancer Research Fund gave us the kick-start that led to a revolutionary new therapy for this dreadful disease,” Wagner says.
Prior to Keric’s 2008 transplant, where his sister served as donor, his life was limited. “Our whole life as a family revolved around daily dressing changes,” says Keric’s mom, Krista Boyd, D.O.
Tolar, director of the U’s Stem Cell Institute, says that Keric was brave and notes that at that time he was only the fourth EB patient to undergo the procedure. Now more than 20 children have undergone this procedure.
Today, Keric is busy attending school, riding his bike, and participating in 4-H. His pain has decreased, his healing time is faster, and his bandages are changed just twice a week.
“He’s a totally different kid,” says Tolar. “However, it’s not a cure. We are at one point on a path to make EB a curable disease.”
Wagner concurs: “Our role is simple—we are out to cure the incurable.”