Epidermolysis bullosa
Overview
What is epidermolysis bullosa?
Epidermolysis bullosa is a rare genetic skin disorder characterized by extremely fragile skin that blisters and tears from minor friction or trauma.
How common is epidermolysis bullosa ?
Epidermolysis bullosa affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB).1
Questions regarding your epidermolysis bullosa therapy
You can reach the Accredo epidermolysis bullosa care team, anytime, day or night, seven days a week by phone or online.
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Symptoms
What are the symptoms of epidermolysis bullosa?
Symptoms range in severity from mild to severe. You may notice: 2
- Chronic blistering on the skin, in the mouth, respiratory, gastrointestinal and genitourinary tracts
- Ulceration, scarring/thickening of the skin
- Joint contractures
- Strictures of the esophagus and mucous membranes
- Nails that are thick and not formed
- Difficulty swallowing and dental problems
- Painful, itchy skin
- Recurrent infections
How is it diagnosed?
A doctor may suspect epidermolysis bullosa from the appearance of the affected skin. When epidermolysis bullosa is suspected, a skin biopsy should be obtained to confirm the diagnosis. Genetic testing is sometimes used to confirm the diagnosis because most forms of epidermolysis bullosa are inherited. A small sample of blood is taken and sent to a lab for analysis.2
2. Epidermolysis Bullosa - NORD (National Organization for Rare Disorders) (rarediseases.org)
3. 3. Epidermolysis Bullosa: Diagnosis and treatment (aad.org)
Medications
Medications
The following specialty medications are available at Accredo, a specialty pharmacy for epidermolysis bullosa.
| Drug | Manufacturer |
|---|---|
| Filsuvez® (birch triterpenes) | Amryt |
Financing Your Care
Financial assistance coordination may be available to help with your medication costs, including manufacturer and community programs. Accredo representatives are available to help find a program that may work for you.
Community financial resources
- Amryt Assist – Filsuvez Copay Assistance Program | 888-509-0572
Financial Guidance
Life-saving specialty medication can be expensive. Learn how the Accredo teams help individuals find ways to afford the medication they need to survive in this video.
Find Support
Epidermolysis bullosa organizations.
Support organizations
- The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA)
- EB Medical Research Foundation
- Genetic and Rare Diseases (GARD) Information Center
Meet the Team
Accredo’s epidermolysis bullosa care team is dedicated to serving you and we understand the complexity of your condition. Our specialty-trained clinicians are available 24 hours a day, seven days a week, to answer any questions.
Why We Do It
Accredo supports patients with chronic and complex conditions and helps them live their best life. Watch our video to learn why we do what we do for our patients.