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Coping and support
By Mayo Clinic staffCaring for a child with a chronic disease can be stressful. And providing your child with the emotional support needed to live with a chronic illness and to deal with being different from other children can be extremely difficult. For some people, sharing concerns and information with families in similar circumstances can be helpful.
Ask your health care providers for epidermolysis bullosa support groups in your area. If joining a support group isn't for you, ask about counselors, clergy or social workers who work with families coping with epidermolysis bullosa.
Bandages for patients with epidermolysis bullosa can be expensive. Companies that make these bandages may be willing to work with your insurance company to obtain coverage.
- Epidermolysis bullosa. National Institute of Arthritis and Musculoskeletal and Skin Diseases. http://www.niams.nih.gov/Health_Info/Epidermolysis_Bullosa/default.asp. Accessed June 9, 2011.
- Fine JD, et al. The classification of inherited epidermolysis bullosa (EB): Report of the third international consensus meeting on diagnosis and classification of EB. Journal of the American Academy of Dermatology. 2008;58:931.
- Fine JD. Inherited epidermolysis bullosa: Recent basic and clinical advances. Current Opinion in Pediatrics. 2010;22:453.
- Habif TP. Vesicular and bullous diseases. In: Habif TP. Clinical Dermatology: A Color Guide to Diagnosis and Therapy. 5th ed. Edinburgh, U.K.; New York, N.Y.: Mosby Elsevier; 2010. http://www.mdconsult.com/books/page.do?eid=4-u1.0-B978-0-7234-3541-9..00025-0--s0780&isbn=978-0-7234-3541-9&uniqId=240601062-5#4-u1.0-B978-0-7234-3541-9..00025-0--s0780. Accessed June 8, 2011.
- About EB. Dystrophic Epidermolysis Bullosa Research Association. http://www.debra.org/abouteb. Accessed June 10, 2011.
- Progress in epidermolysis bullosa research: Toward treatment and cure. The Journal of Investigative Dermatology. 2010;130:1778.
- Healthcare problems. Dystrophic Epidermolysis Bullosa Research Association. http://www.debra.org/healthcare. Accessed June 10, 2011.
- Hand JL (expert opinion). Mayo Clinic, Rochester, Minn. June 15, 2011.
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