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news News Tuesday, November 5, 2019 Tuesday, November 5, 2019 11:05 AM - Tuesday, November 5, 2019 11:05 AM

A promising approach to a rare genetic skin condition

A promising approach to a rare genetic skin condition

On Wednesday, October 2, Shriners Hospitals for Children — Boston hosted a collaborative discussion and presentation about a promising new approach to treating patients with epidermolysis bullosa (EB), a rare genetic skin condition that prevents the epidermis from adhering to a person’s body. Individuals with EB are described as “butterfly children” because their skin is so fragile it resembles wings of a butterfly. The skin blisters and tears easily, resulting in excruciating and debilitating pain. There is no cure for EB – the only treatment for EB is daily dressing of a patient’s wounds, which can cover most of their body.

Michele DeLuca , M.D., professor of biochemistry at the University of Modena and Reggio Emilia and director of the University’s Center for Regenerative Medicine, has been exploring the genetics of EB for years. Dr. DeLuca was a fellow who studied with Howard Green, M.D., at Shriners Hospitals for Children — Boston in the 1980s. Dr. Green was a pioneer in the field of stem cell therapy. He was the first to use a patient’s own skin to grow skin grafts. These grafts were then used to treat patients with severe burns and represented a significant advancement in the ways burns were treated. During his time at the Boston Shriners Hospital, Dr. DeLuca helped treat two children with EB. This experience stayed with him, and he has been exploring ways to improve outcomes for patients with EB for years. 

Dr. DeLuca’s approach to EB involves the transplantation of genetically modified epithelial cells. They are used to generate healthy skin tissue which can then be grafted onto a patient with EB. Dr. DeLuca and his team were approached by physicians caring for a young patient who was in critical condition as a result of EB. Doctors were able to use his own skin as the foundation for growing genetically modified epithelial cells and grafting new skin. The results over time were dramatic. The young boy’s health and long-term prognosis improved, and he was even able to start playing soccer with his friends.

Dr. DeLuca’s groundbreaking research on skin cells can lead to dramatic breakthroughs in the treatment of EB and potentially create opportunities to treat other skin conditions. 

The parents of a patient with EB attended the collaborative discussion and presentation, offering riveting and emotional insight into the challenges of making sure their son received the treatment he needed. They described difficulties getting their insurance company to approve certain services until they encountered a compassionate case manager who understood what their son needed. They continue to experience challenges getting services approved and many needs are not covered by insurance. It was also noted that families without strong financial support are under great stress due to time and resource pressures.

“Shriners Hospitals for Children — Boston is a center of excellence for pediatric burn care and an ideal collaborator for researchers like Dr. DeLuca. His work compliments the research being done at the Boston Shriners Hospital to improve care for patients with severe burns and skin disorders,” stated Robert Sheridan, M.D., interim chief of staff and medical director of the burn service at Shriners Hospitals for Children — Boston. 

“There is great motivation at Shriners Hospitals for Children  Boston  to get the clinical treatment more easily available to patients with EB. Dr. DeLuca is seeking a scientific path that will correct this skin condition, not simply offer palliative care,” stated Hospital Administrator Eileen Skinner.

epidermolysis bullosa presentation