Programs & Services
Epidermolysis Bullosa (EB) Clinic
Your first visit to the clinic will involve various EB team specialists. They will conduct a full skin evaluation on your child, talk to you about your child’s medical history, assess overall health and order any necessary tests, like:
- Biopsies of the skin
- Blood tests
- Cultures to check for bacterial infections
- Genetic testing
Depending on the severity of the condition, children with EB may need to see the team one to four times per year. Our team is also available whenever children with EB and their families need care, emotional or physical support, guidance on resources and financial help.
- Antibiotic ointments can help treat wounds.
- Bandages and padding on fragile skin can minimize 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 with 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 to cope with the emotional aspects of being diagnosed with an inherited, genetic disorder.
- Nutritious diets and dietary supplements can help children with EB to maintain their health and grow, while a diet of soft foods can help to avoid damage to the mouth and GI tract.
- Physical therapy and occupational therapy can be helpful for children with EB to maintain the full range of motion in their limbs and better perform daily activities of living.
- Surgery is sometimes needed to treat symptoms. This may be for dilating a narrow esophagus (feeding tube), separating fused fingers or toes and/or removing squamous cell carcinoma.
- Wound care is a daily procedure for many children with EB.