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The outlook for people with EB depends on the type and severity. Severe forms of the disease can result in severe pain, disfigurement, disability, wounds that never heal and early death.

Healthcare providers can help you manage symptoms with proper treatment and, if needed, medicines for pain management. Preventive measures — extensive every-other-day wrapping of the skin with nonadhesive, protective dressings — and regular bathing and wound care can help manage EB’s impact.


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