Epidermolysis bullosa (EB) is a condition that causes painful skin blistering. In many patients, the disease also goes beyond the skin to involve other organs. This is why coordinated, multispecialty care is so important for children affected by EB.
At Children’s Hospital of Philadelphia’s Epidermolysis Bullosa Multidisciplinary Clinic, your child has access to all of the different pediatric specialists they may need to manage their disease. We work closely with you and the rest of your child’s medical team to provide a personalized treatment plan in a timely, effective way.
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. We are prepared and well-equipped to provide the high-level care needed by patients with EB.
Your child is able to come to a single clinic to see the many different subspecialists that may be involved in their treatment, who are all experienced in caring for patients with EB.
These specialists include, but are not limited to:
- Gastroenterology and nutrition
- Pain management services
- Physical therapy and occupational therapy
Depending on the needs of your child and how close you live to the Hospital, additional specialists, including surgery, ophthalmology, dentistry, cardiology, endocrinology, hematology and others may be scheduled around your child’s appointment with the EB Clinic.
To ease the burden on your family, our team takes care of coordinating your child’s care. Our dedicated clinic coordinator will work with you to coordinate 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 is specialty care for EB so important?
Because of the nature of the disease and the many body systems it can impact, children with epidermolysis bullosa may need support for a variety of different medical issues.
- Wound care: Because the primary symptom of epidermolysis bullosa is skin blistering, expert wound care is critical for all patients with EB. At CHOP, dedicated pediatric dermatologists with experience managing EB can provide support with wound management and 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. Our team’s familiarity with special dressings and wound care supplies and resources can also help patients navigate insurance.
- 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 and other disease-related issues; esophageal strictures (narrowing of the esophagus caused by scarring) and other related problems. Members from CHOP’s Division of Gastroenterology, Hepatology and Nutrition are an integral part of the EB Clinic team to help manage these issues.
- Anemia: Patients with more severe epidermolysis bullosa often suffer from chronic anemia due to iron deficiency, chronic disease, and blood loss from open wounds. Our hematology specialists are prepared to treat all types of anemia.
- Chronic pain: Recurrent blisters can lead to chronic pain. Children’s Hospital of Philadelphia has a dedicated pain team that will provide a comprehensive pain management plan to address your child’s pain.
- Psychology: Dealing with a chronic disease like EB can be extremely stressful and overwhelming for patients and their families. Psychologists can provide coping strategies to help alleviate some of the pain and stress associated with this condition.
- Physical therapy and occupational therapy: Patients with EB may require outpatient physical therapy or special equipment such as beds or ambulation devices. The EB Clinic includes dedicated physical and occupational therapists who are experienced working with EB patients both within the Hospital and follow-up care at home.
- Social work: Ongoing wound care and the need for wound care supplies can present emotional, physical and financial challenges. Our dedicated social worker can help your family access hospital and community resources, answer questions about insurance, school access and legal rights, and connect you with other support services you may need.
- Research: Because there is no cure for EB, we will also focus on new clinical trials for our famiies. The clinic has a dedicated pediatric dermatologist who specializes in clinical research trials.