Support for EB

Here are different ways DEBRA Canada support EB

Medical Committee

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

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Medical Assistance Fund

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:

1. Name

2. Address

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:

debra@debracanada.org

Or to DEBRA Canada

Postal Office Fruitland, Box No. 11111

Stoney Creek, Ontario

L8E 5P9

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Support for EB

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

Fax: 416-813-7909

Email: elena.pope@sickkids.ca

SickKids EB Clinic webpage:

http://www.sickkids.ca/Dermatology/What-we-do/Epidermolysis-bullosa/index.html

EB Clinic opened January 2004 at Hospital for Sick Children

Dr. Catherine C. McCuaig – Director, Epidermolysis Bullosa Clinic

Dermatology Service

Sainte-Justine Hospital

3175 chemin Côté Ste Catherine

Montréal, Québec, H3T 1C5

Tél.: 514-345-4982/514-345-4675

Fax: 514-345-2134 Attention Dr. McCuaig

Pager: 514-345-4788 (6303)

Email: catherine_mccuaig@ssss.gouv.qc.ca

Dr. Juliette Prendiville – Division Head and Program Director

Division of Pediatric Dermatology, Department of Pediatrics

BC Children’s Hospital

UBC Faculty of Medecine

Room K4-100

4480 Oak Street

Vancouver, BC, V6H 3V4

Phone: 604-875-2864

Fax: 604-875-3076

Email: jprendiville@cw.bc.ca

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Free School DVD

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.

This free DVD is available by clicking here to place an order.

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

Socialization

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

Swallowing
.
Esophageal blisters or scarringRespect “no” if unable to eat
Have snacks available (i.e., puree foods, liquids)

Bandages
.
Protect skin
Help heal skin
Overheating

Odor
.
Help other students understand
Speak with nurse and/or parent
Be aware of infections

Depression
.
Be aware of psychiatric symptoms (i.e., withdrawn, isolated, sadness)
Talk with parents
May need psychiatric evaluation and support

Pain
.
Pain control and management
Rate pain, on scale 0 – 10
Pain medications

Bathroom
.
Set up bathroom time (i.e., 10 minutes)
Reward program or goal sheets

Parents
.
Communicate regularly
Written back and forth log
Common knowledge and goals

Control
.
Need sense of control
Self-advocacy
Recognize talents and strengths

Good Days and Bad Day
.
Status fluctuates
Pain
Schedule time to check in with the nurse
Allow breaks