How Can I Find Support?
Epidermolysis bullosa affects every aspect of family life. It can be emotionally distressing for you, your child, and family members. EBS patients and their families need the lifelong support of their healthcare team, extended family, and the EB community.
The daily activities of blister management and concern about future problems is a constant source of stress. It may help to connect with EB families facing similar challenges. You can find a list of patient advocacy groups here.
If connecting with a support group isn’t for you, reach out to counselors or social workers with experience helping families coping with epidermolysis bullosa or other severe chronic health conditions. Discuss options such as cognitive behavioral therapy with a mental healthcare professional. These types of techniques may be effective for EB patients and families.
All EB families experience a financial burden due to the cost of wound care supplies, medications, reduced employment opportunities, and missed workdays. Learn more about debra of America’s legal aid program here.
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Specialized Epidermolysis Bullosa
Centers Centers that specialize in the diagnosis, evaluation and treatment of people with epidermolysis bullosa may belong to a network called EB CLINET. Visiting specialty care centers regularly can improve quality of life and reduce hospitalizations for people with epidermolysis bullosa.
Here is a list of specialized EB Centers:
Stanford University School of Medicine Epidermolysis Bullosa Clinic
Children’s Hospital Colorado, Dermatology
Children’s Hospital of Chicago, Dermatology
Epidermolysis Bullosa Center
Children’s Hospital of Philadelphia (CHOP)
University of Minnesota