More EB Guides

Anemia is a common complication in severe forms of EB. Learn about the diagnosis and management of anemia in the EB population as outlined in these Clinical Practice Guidelines.

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The most frequent cancer that affects those with EB is called Squamous Cell Carcinoma (SCC) and can grow and spread quickly. Learn about the diagnosis and management of SCC in the EB population as outlined in these Clinical Practice Guidelines. 

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Learn about preventative nutritional care for the management of constipation in children and adults with Epidermolysis Bullosa (EB). 

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Our Recommendations for Daily Living address a variety of topics, such as adaptive equipment, shoe suggestions, scooter options, and more. 

The eyes are an area that are prone to having issues for people with EB. Pediatric Ophthalmologist, Vicki M. Chen, MD, offers strategies on how to prevent blistering, scarring, and vision loss. 

Skin affected by EB is prone to blistering and scarring in areas exposed to repeated pressure or friction, like the feet. Learn about foot care in EB to help limit blister formation, pain and discomfort.

EB causes blistering and scarring of the hands resulting in contractures fused web spaces and altered function. Surgery is needed to release contractures and web spaces and hand therapy is essential to maintain results. Learn about these two approaches in these Clinical Practice Guidelines. 

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It is important for those with EB to get an accurate diagnosis to help determine the type and subtype of EB.  

For those with EB, proper nutrition is vital for adequate growth and development, wound healing, immune system function, and more. Colleen Vicente, a Registered Dietitian at Children’s Hospital of Philadelphia, offers strategies for managing nutrition in children and adults with EB.

Occupational and Physical Therapy can assist you or your loved one when there are concerns regarding motion, strength, or loss of function. We provide information on the differences between the two practices and the support they offer.

Dental problems can occur with different frequencies and different degrees of severity in many forms of EB. debra of America has compiled a list of helpful resources on this subject for both the EB patient and oral health care providers. 

Pain and itching are burdensome daily problems for people living with Epidermolysis Bullosa (EB). Learn about pain care in EB for all subtypes and ages in these Clinical Practice Guidelines. 

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This consensus guideline on palliative and end-of-life care offers evidence-based, best care guidelines to prevent or ease suffering while improving comfort at all stages of Epidermolysis Bullosa. 

These Clinical Practice Guidelines aim to improve the effectiveness and quality of pregnancy and childbirth are for women of reproductive age with EB.  

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Psychosocial support encompasses psychological, social, emotional, and spiritual wellbeing.

EB does not inhibit an individual’s ability to participate in sexual activities. Read recommendations to help support sexual participation of those living with EB in these Clinical Practice Guidelines. 

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Read Commonly Asked Questions about EB care received by our EB Nurse Educator. Topics include braces, tattoos, breastfeeding, and more. 

Beinvenidos a debra of America. Aquí encontrará recursos para ayudarlo a usted o su hijo.