Patient care & support

Janet Hoskin's 'A Guide to Duchenne Muscular Dystrophy' published

Janet Hoskin's has published a book: 'A Guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents'.

Janet currently teaches on the undergraduate and postgraduate Special Education programmes at the University of East London and is involved in several research projects that focus on young people with SEND and life limiting impairments. 

Janet has worked on various projects for yound people with DMD, she has also worked with children and young adults with a range of Special Educational Needs and Disability though Decipha CIC, in particular she led a Department for Education funded Leadership Project for young adults with life limiting impairments from 2012-2014. Duchenne UK fund Decipha CIC  to work with young people with DMD and their schools to support any barriers to learning they may face. If you are worried about issues concerning school, contact Decipha. 

'A Guide to Duchenne Muscular Dystrophy: Information and Advice for Teachers and Parents' brings together chapters by a range of experts in DMD aimed at supporting young people and their families as they move through school and college. It is not primarily aimed at the physical progression of DMD but rather focuses on learning and behaviour challenges. Chapters include advice on assessment, reading, behaviour strategies and planning as well as how to talk to children about having DMD. Most of all it's about getting the best life possible if you have Duchenne Muscular Dystrophy. 

Emily Crossley from Duchenne UK said:"This book is long overdue and will be a welcome resource for parents, caregivers, teachers and patients with Duchenne muscular dystrophy. It provides a compass with which to navigate the world of Duchenne muscular dystrophy, giving patients and caregivers they need to manage the emotional, behavioural and learning challenges that sit alongside the physical realities of DMD. I found the chapter on talking to your children especially helpful, as I am very often asked by families when is the "right time" to tell their children. This book shows that although there is no right time, there are ways of addressing these unbelievably difficult conversations that will help. And there is lots else in the book to give parents the hope that their children can shoot for the stars and create as Dr Jon Hastie so movingly described a "fantastic life" "

Janet Hoskin has recently become a member of the Duchenne UK Patient Advisory Board. Our Patient Advisory Board (PAB) is made up of parents of children and young adults of different ages, who advise and give feedback on the projects we are considering for funding.


Published on 14 December 2017

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