THE NEW BABY WITH EB
Information for parents
Jacqueline Denyer, EB Nurse Consultant
Published by DebRA © 2009
Two booklets; practical help and advice on Nutrition in EB
1.Nutrition for Babies with Epidermolysis Bullosa
2.Nutrition in Epidermolysis Bullosafor children over 1 year of age
Both booklets has been written by Lesley Haynes RD,
Principal Paediatric Dietitian for Epidermolysis Bullosa (EB)
Great Ormond Street Hospital for Children
NHS Trust London WCIN 3JH, UK
Published by DebRA ©
Dystrophic Epidermolysis Bullosa
This publication gives practical help and advice to parents in the care and management of children with Dystrophic EB.
Jacqueline Denyer, EB Nurse Consultant (Children)
DebRA UK 2008
Published by DebRA ©
The eyes and EB
Ms Gillian SIM Ophthalmic Nurse Specialist
Mr Malcolm Kerr-Muir Consultant Ophthalmologist
Living With EB - Impact on Daily Life
Anja Diem, MD (Manager of the Outpatient Unit of the eb-haus Austria)
In: Life with Epidermolysis Bullosa (EB) Etiology, Diagnosis, Multidisciplinary Care and Therapy
ISBN 978-3-211-79270-4 Springer Wien NewYork
Dette er fra websiden EB-Haus Austria: www.eb-haus.eu
4 subject concerning EB
1. Medical Care Info
2. All About Anemia
3. EB and Dental Care by Melanie (Logan) England
4. Skin Cancer in RDEB, Where to Start, Where to Stop and What the Future May Hold.
By Daniel Mark Siegal MD, MS, Associate Professor, Vice Chair and head of Dermatologic Surgery, Department of Dermatology, SUNY@Stony Brook
All this information have we found on EB info world (http://www.ebinfoworld.com/brochures.htm) and we have got the permission to put it on the debra Norway site
Physiotherapy for Children with EB
This publication gives practical help and advice to parents Physiotherapy for school children with EB
Michelle Wood, Senior Physiotherapist GOSH.
Published by DebRA ©
This publication gives practical help and advice to parents on play and development of children with EB
INTRODUCTION: As parents with a child who has just been diagnosed as having Epidermolysis Bullosa it is difficult at first to look forward to the future. If that child is to develop as normal a life as possible then we have to encourage them every step of the way. Each new milestone achieved is as important to the child as it is to the parent. We need to show the child that it can be fun to learn.
I hope that what I have learned may be of some use to you.
Joyce Stebbings, Play Specialist, Great Ormond Street Hospital
Updated April 1997, From original material by Helen Gascoine
Published by DebRA ©
Questions and answers about Epidermolysis Bullosa
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institutes of Health, Public Health Service • U.S. Department of Health and Human Services
You can also find this booklet on the NIAMS Web site
at www.niams.nih.gov/hi/topics/epidermolysis_bullosa/
epidermolysis_bullosa.htm.
NIH Publication No. 03–7038, June 2003
Relationships /EB and Pregnancy
Janice Carrera, Social worker, and Liz Pillay, Senior EB Nurse Specialist for Adults (DebRA UK)
From debra Europe meeting in Stockholm 2005
Pregnancy and Childbirth in EB
DebRA UK EB Nurse Specialists Adult Team
Liz Pillay – Senior EB Nurse Specialist
Jackie Hitchen – Senior EB Nurse Specialist
Jennie Hon – EB Nurse Specialist
Pauline Graham-King EB Nurse Specialist
With grateful thanks to those people with EB who have shared their experiences of pregnancy and childbirth with the nursing team.
Published by DebRA ©
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