Epidermolysis Bullosa (EB) Clinic
About the Clinic
The Dermatology Clinic started the first EB clinic in 2004 to positively impact the care provided to patients with EB by coordinating services, increasing local expertise through an interdisciplinary team approach and improving wound prevention and care.
EB contains a group 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.
What to bring:
- All dressing supplies you need for a complete redressing
- Past photos of your child’s skin issue, if available.
The Dermatology Clinic is located in Clinic 7 on the Main Floor of the Black Wing. The clinic is located near the University Avenue entrance.
What to Expect During Your Visit
At the start of your visit, a nurse will take your child to a room to capture your child’s height, weight, blood pressure and take photos. There may be times when this will not be done first, but at some point in the visit. A resident or fellow will then perform an assessment and will review their findings with staff. The resident or fellow will return with a staff physician to confirm the initial assessment and direct a plan.
Other dermatology residents and fellows may be asked to join the team in the room to learn. That’s because SickKids is a teaching hospital affiliated with the University of Toronto, so we help train doctors, nurses and other health-care professionals. As a result, this may mean that a clinic visit may take longer to complete. Please be prepared to be here for the better part of a morning or afternoon. We suggest that you bring extra diapers, feedings for babies and a favourite toy for your child. Your child may be asked to be fully undressed during the appointment in order for the doctors to examine your child’s skin.
Clinic schedules may change at any time. If this does happen, clinic staff will contact you to notify you of the appointment change.
Visit Dermatology Department
Fax for General Inquires: 416-813-7055
Fax for New Referrals: 416-813-7848
Coming to a clinic appointment
It's important to come prepared and be on time for a clinic appointment. Visit Coming for Clinic Appointments to read appointment guidelines that are applicable for most clinical appointments at SickKids.
You’ll find information on how to prepare and what to bring, what to do if you/your child are sick before your appointment or you need to cancel, and important things to know about the SickKids philosophy.