Dedicated experts for all of your child’s needs

Our team has many years of experience providing specialized care for children with all types of epidermolysis bullosa (EB). We are experts in providing the high level of care needed by patients with EB.

To make your life easier, your child can come to a single clinic to see the many different subspecialists that may be involved in their treatment. These experts include but are not limited to:

• Dermatology
• Gastroenterology and nutrition
• Pain management services
• Psychology
• Physical therapy and occupational therapy

Depending on your child's needs, additional specialists may be scheduled around your child’s appointment with the EB Clinic. These additional specialties may include surgery, ophthalmology (eyes), dentistry, cardiology, endocrinology, hematology and more.

Family-centered care

Our team helps arrange your child’s care to ease your family's stress. Our dedicated clinic coordinator will also work with you to schedule additional appointments with other specialists.

We make every effort to schedule these appointments either on the same day as your main EB Clinic visit or the day before or after to minimize your travel back and forth to CHOP.

Why specialty care for EB is so important

Due to the nature of the disease and the many parts of the body that can be affected, children with epidermolysis bullosa may need support for a variety of different medical issues. Among them:

• Wound care. Because the primary symptom of EB is skin blistering, expert wound care is critical for patients. At CHOP, dedicated pediatric dermatologists with experience managing EB can provide support with wound management as well as monitor for skin cancers. Additionally, you’ll find skilled wound care nurses and nurse practitioners who specialize in managing chronic, hard-to-treat wounds in children.
• GI issues. Patients with EB may experience gastrointestinal issues such as chronic constipation or diarrhea, nutrition and vitamin deficiencies, growth problems related to poor absorption of food, narrowing of the tube between the throat and stomach (the esophagus) caused by scarring, and other problems. Members from CHOP’s Division of Gastroenterology, Hepatology and Nutrition are an integral part of the EB Clinic team to help your child manage these issues.
• Anemia. Patients with more severe EB often suffer from chronic anemia due to iron deficiency, chronic disease and blood loss from open wounds. Our hematology specialists are prepared to treat every type of anemia.
• Chronic pain. Recurrent blisters can lead to chronic pain. Our dedicated pain team will provide a comprehensive pain management plan to address your child’s pain.
   
• Physical therapy and occupational therapy. Patients with EB may require outpatient physical therapy or special equipment such as beds or devices to assist with walking. The EB Clinic includes physical and occupational therapists who are experienced in working with EB patients both within the hospital and at home.

Support beyond the medical

• Insurance issues. Our team’s familiarity with the special dressings and wound care supplies your child will need can help you navigate insurance claims.
• Psychology. Dealing with a chronic disease like EB can be extremely stressful and overwhelming for patients and their families. Our psychologists can provide coping strategies to help alleviate some of your family's anxiety and stress.
• Social work. Ongoing wound care and the need for wound care supplies can create emotional, physical and financial challenges. Our social worker can help your family find hospital and community resources, answer questions about insurance, school access and legal rights, and connect you with other support services you may need.

We will support you and be by your side every step of the way.