Coping and Suport
Patients suffering from EB experience a significant impairment in their quality of life. Patients have great restrictions in physical, social and sporting activities. They can also have limited employment and education opportunities if the condition is severe. Children with EB may have a more difficult time developing friendships and experience social isolation or psychological problems as their ability to participate in the physical aspects of a normal childhood experience is prevented by the pain they experience. Counselling may be needed to help cope with this disease.
There is a tremendous burden on families with children that have EB. The primary support groups that exist to support families and patients living with EB are:
- Debra Canada (www.debra.org)
- Debra International (www.debra-international.org)
- EB Research Partnership (www.ebresearch.org/)
- EB Clinic at Sick Kids Hospital (www.sickkids.ca/areas-of-care/clinics/eb-clinic.html)
- EB Clinics at Sainte Justine Hospital (Pediatric) and at the CHUM (Adult clinic)