Epidermolysis Bullosa (EB)
EB Awareness Week - October 25 to 31
Epidermolysis bullosa (EB) Awareness Week starts on October 25 each year, as decreed by the US Congress and hopefully, soon by the Canadian parliament. The purpose of this week is to raise awareness of the condition and its impact on patients and their families.
EB is an inherited, lifelong, recurring blistering condition which affects the skin and internal organs, causing severe pain and eventual dysfunction of limbs, appendages and internal organs.
Children with EB have difficulty with daily activities, such as walking and feeding, as well as growth, development, dentition, nutrition and breathing. Their skin care is very comprehensive and involves dressing changes and special clothing that won't irritate their skin.
Children and their parents require a great deal of support, both financial and emotional, as the disease progresses. To date, there is no cure for this condition, but much can be done to improve the quality of life for children with EB and their families.
SickKids started an interdisciplinary EB clinic in 2004. The clinic has positively impacted on the care provided to these patients by appointment co-ordination, increased local expertise and improved wound care.
EB is a series of genetically inherited disorders where the skin is prone to blistering. There are three major types of EB; each type is very different in the way that it affects the skin:
- Epidermolysis Bullosa Simplex
- Dystrophic Epidermolysis Bullosa
- Junctional Epidermolysis Bullosa
There is no specific treatment for EB and most therapeutic guidelines target prevention of trauma as the desired approach. In everyday life, complete avoidance of friction or trauma is impossible, so most patients experience different degrees of blistering and development of chronic wounds. As in other skin diseases, this condition can have a profound impact on the daily activities of affected patients. The limitations patients may have due to pain, itch, odour and time-consuming dressing changes are problems that affect their quality of life. The EB clinic at SickKids offers an interdisciplinary approach to management of this condition.
Tips for Managing a Patient with EB:
- Find a supportive medical team that both your child and your family can use as a support system.
- Seek counseling for effective footwear (to prevent blistering of the feet as much as possible)
- Buy soft and non-irritating clothing. Avoid clothing seams having contact with the skin whenever possible.
- Avoid warm/hot temperatures, they tend to induce blistering.
- Talk to your child’s physician about a plan for bandaging the blister sites, many bandages can cause more damage to the skin, it is very important to devise a plan that works with your child’s condition.
- Receive genetic counseling. Because EB is a genetically inherited disease, it is very important that both you and your child get advice on the genetics of this condition and what to expect in the future.
- Treat your child as normally as possible, allow them to become comfortable with setting their own boundaries. Encourage independence and growth.
Performing General Nursing Care for the infant with EB:
View document - PDF format
Location of Clinic:
Clinic 7, Main Floor, Elm Wing
Our Specialists/Team Members:
Dermatology: Dr. Elena Pope (medical director)
Dermatology: Dr. Irene Lara-Corrales
Dermatology: Michelle Lee, RN (EB nurse specialist & EB clinic coordinator)
Gastroenterology: Dr. Peggy Marcon
Hematology: Dr. Melani Kirby
Opthalmology: Dr. Asim Ali
Plastic Surgery: Dr. Ronald Zuker and Dr. Joel Fish
Dentistry: Dr. Peter Judd
Social Worker: Nimrita Aujla, RSW
Occupational Therapy: Lisa Lazzarotto
Physical Therapy: Jamil Lati
How to Contact Us:
Please follow the referral process to book an appointment for the EB Clinic. If you are a SickKids patient, please contact 416-813-7384 to book an appointment.