Regional Epidermolysis Bullosa Center
Children's Hospital Colorado offers the only center in the region for patients with this genetic skin condition. Specially trained and experienced clinicians provide the delicate, individualized care these patients require. Patients participate in physical and occupational therapies to address issues of mobility, equipment needs, feeding and hand function.
The multidisciplinary clinic is held one day a month, and patients see clinical staff from Nutrition, the Pain Service, Psychiatry, Dermatology and GI, in addition to pediatricians and child life therapists.
Patients have access to Anesthesia services and a Pain Team to minimize pain for procedures and exams. Also, a full-time EB nurse assists with in-hospital dressing changes.
Decisions regarding pain management during procedures and exams are made with the family and the EB team to determine what is best for each patient.
Following each clinic, the disciplines meet and give recommendations so the primary care providers can receive dictations of the evaluations. The clinic also provides a valuable opportunity for parents to talk to other parents.
Winter Adventure Camp for EB Patients
Each year the EB clinic sponsors a Winter Adventure Camp (Camp Spirit) for children with recessive dystrophic EB. The camp is held in Winter Park, Colorado, where the campers ski in bi-skis, learn to drive a dog sled, ride snow mobiles, and see wildlife. Campers also get to participate in engaging evening activities. The next camp is scheduled for February 21-25, 2010. For more information, please contact Kaycie Artus at (303) 526-1018.