Programs & Services

Before your first visit to the EB Clinic, we will ask that you fill out a patient health history form and provide all medical records from any previous primary care physicians or dermatologists. If you or your child have had any skin biopsies or genetic testing, we will ask for those results. Our EB nurse and EB clinic coordinator will contact you about scheduling an appointment.

Your first visit to the clinic will involve various EB team specialists. They will conduct a full skin evaluation, review medical history and assess overall health. They’ll also order any necessary tests, such as blood work, bacterial wound cultures of the skin or genetic testing.

Depending on the severity of the condition, children with EB may need to see the team one to four times per year. We’ll assess progress and make any needed adjustments to best manage your child’s condition at each visit.

Managing EB

• Bandages and padding on fragile skin can help reduce damage to the skin and prevent the spread of infections.
• Dental care is extremely important for children with EB. Our team can advise your dentist on treatment or refer you to a dentist with experience in treating EB.
• Gastrostomy tube insertion into the stomach may be needed to deliver nutrients to children with EB who have difficulty swallowing.
• Genetic counseling is useful to help children with EB and their families cope with the emotional aspects of being diagnosed with an inherited genetic disorder.
• Nutritious diets and dietary supplements can help children with EB maintain their health and growth, while a diet of soft foods can help children with EB maintain the full range of motion in their limbs and better perform daily activities.
• Surgery is sometimes needed to treat symptoms. It may be needed for dilating a narrow esophagus (feeding tube), separating fused fingers or toes or removing squamous cell carcinoma.
• Wound care is a daily procedure for many children with EB. 
• Palliative care is available to help with pain management and how to care for a loved one with an incurable disease.

Clinical Research

Our team of specialists are actively involved in drug and nondrug clinical trials. We work closely with other EB centers around the world to offer the most comprehensive opportunities to contribute to the search for a cure for EB. If you have questions about a clinical trial, please contact our clinical nurse at 602-933-2053 or search www.clinicaltrials.gov.