Here are different ways DEBRA Canada support EB
The Medical Committee is a group of doctors who have been selected because they have a special interest in EB or see EB patients on a regular basis in their practice. This group of doctors acts as an advisory board for DEBRA Canada on medical issues.
As we contact doctors across Canada, we are also hoping to achieve a more balanced regional representation on the medical committee.
DEBRA Canada MEDICAL ADVISORY COMMITTEE
Dr. Edward Barrett, Pediatric Dentist;
Hospital for Sick Children, Toronto, ON
Dr. John Doyle, Hematologist; Hospital for Sick Children, Toronto, ON
Dr. Bernice Krafchik, Dermatologist; Hospital for Sick Children, Toronto, ON
Dr. Andrew Lin, Dermatologist; University of Albert
Dr. Julie Prendiville, Dermatologist; BC Children’s Hospital, Vancouver, BC
Dr. Gary Sibbald, Dermatologist; Sunnybrook and Women’s College Health Sciences Centre, Toronto, ON
Dr. Margaret Marcon, Gastroenteroligist, Hospital for Sick Children, Toronto, ON
One of the ways that DEBRA Canada supports Canadian families living with EB is the MEDICAL ASSISTANCE FUND. The purpose of this FUND is to provide financial assistance to the victims of this crippling disease.
The purpose of this fund is to provide financial assistance to the victims of this crippling disease.
The Fund is available to assist with medical and related expenses that are not covered by other health assistance plans at any level of government. Items that are considered are varied. These depend on the health plan of the respective Province. The Medical Assistance Fund Committee has been created to deal with each request on an individual, case by case, basis. Since the funds inception in 2003 many families have been helped.
We request that you provide the following with your request:
3. Phone, or E- mail if possible
4. Name of family member afflicted with EB
5. Nature of your request
6. Details of the request
7. Verification that the request is not covered by any other health plan provincial or private
8. Cost of the request
9. Do you have assistance through personal resources and/or provincial and/or private health plans
10.Brief explanation of how this item will further the quality of life of the EB sufferer and their family
** Please note that the consideration and notification process will take approximately 4-5 weeks.
All requests should be sent to:
Or to DEBRA Canada
Postal Office Fruitland, Box No. 11111
Stoney Creek, Ontario
Dr. Elena Pope – Section Head, Assistant Professor
Epidermolysis Bullosa Clinic
The Hospital for Sick Children
Clinic 7, Main Floor, Elm Wing
555 University Avenue
Toronto, Ontario, M5G 1X8
Phone: 416-813-6883 – use referral process to book an appointment, call 416-813-7384
SickKids EB Clinic webpage:
EB Clinic opened January 2004 at Hospital for Sick Children
Dr. Catherine C. McCuaig – Director, Epidermolysis Bullosa Clinic
3175 chemin Côté Ste Catherine
Montréal, Québec, H3T 1C5
Fax: 514-345-2134 Attention Dr. McCuaig
Pager: 514-345-4788 (6303)
Dr. Juliette Prendiville – Division Head and Program Director
Division of Pediatric Dermatology, Department of Pediatrics
BC Children’s Hospital
UBC Faculty of Medecine
4480 Oak Street
Vancouver, BC, V6H 3V4
This two-part DVD was developed by the multidisciplinary Epidermolysis Bullosa Team at The Children’s Hospital of Colorado, and is endorsed by DEBRA of America. It is a guide for making the school experience supportive and academically challenging for students with Epidermolysis Bullosa.
The first part of the DVD, What is EB, is designed to familiarize students and teachers with some of the issues facing children with dystrophic EB. This kid friendly segment is hosted by a child with EB and other children with EB and their classmates and teachers share their perspectives about EB in the school environment. The goal is to help students with EB feel more accepted and less isolated in the classroom.
The second part of the DVD, Your Welcoming Classroom, is specifically designed to provide teachers, school nurses, therapists and administrators with the information and tools to better understand EB. It is designed to improve communication between the child, family, medical and educational communities.
The following is an overview of the content of Your Welcoming Classroom (for School Personnel Only):
- What is EB?
- Genetic, not contagious
- Different types
- Integrating the student into Classroom
- Special needs
- Interview with parents
- Develop plan
- Classroom Management
- Welcome EB students and involve them in activities
- Educate other students about EB (i.e., go to different classrooms)
- Educate other students about abilities and limitations
- How can other students help?
Understanding the Issues of Importance for students with EB
Esophageal blisters or scarringRespect “no” if unable to eat
Have snacks available (i.e., puree foods, liquids)
Help heal skin
Help other students understand
Speak with nurse and/or parent
Be aware of infections
Be aware of psychiatric symptoms (i.e., withdrawn, isolated, sadness)
Talk with parents
May need psychiatric evaluation and support
Pain control and management
Rate pain, on scale 0 – 10
Set up bathroom time (i.e., 10 minutes)
Reward program or goal sheets
Written back and forth log
Common knowledge and goals
Need sense of control
Recognize talents and strengths
- Good Days and Bad Day
Schedule time to check in with the nurse