Duchenne UK was founded by DMD parents, so we know how tough it is to hear this news. We’ve produced a set of resources that we hope will help you cope and plan your child's care.
The Duchenne UK Family Folder
Our folder for newly diagnosed families includes information about DMD and how you can look after your child, your family and yourself. It will help you protect their health, manage their education and make the most of life.
You can request a free printed copy of the folder using the form below. You can also download a digital copy of each chapter below.
Please note that we can only post within the UK.
UPDATE: We are awaiting delivery of Newly Diagnosed Folders at the present time. We will send out your copy as soon as new stock is received.
In the meantime, you can download a digital copy from the ‘Download Family Folder Chapters’ dropdown below this form. Thank you for your patience.
Request a copy of the Newly Diagnosed Family Folder
You should tell your child and your other children about the diagnosis soon. Children can usually sense when their parents are upset and worried. They can feel unsettled if they know something is wrong, but they don’t know what it is.
The most important thing is to make sure that what you say is truthful, age-appropriate and makes sense to your child.
You only need to share what you are comfortable with sharing. You may choose to tell your child that they have DMD using words like: ‘The doctors have told us that your muscles are different to other children’s – and this will make it harder for you to do some things. There are lots of people around the world working really hard to find ways to make this better. There isn’t any medicine that will fix it at the moment, but there are a few things we can do that will help (like stretching).’
Try to keep focused on the here and now. Talk about it what it means in the short term. Avoid looking too far ahead. You can then build on this information slowly over the years as they start to ask questions.
For further advice on what you should say to them and how you should answer their questions, please read ‘Chapter 2 – Child and Family’ of our DMD Family Folder.
We know that it can be difficult to talk to others about DMD, particularly when you are still trying to come to terms with the diagnosis yourself.
We have created a series of guides to share with friends and family, teachers, babysitters and employers to help them understand DMD and what it means for you and your child.
Getting the right treatment and care early on can make a difference to the progression of DMD and your child’s quality of life. Find out more about what is currently recommended for children and young people with DMD by visiting our Treatments and care page.
There are some new treatments, such as gene therapy, that are currently being tested in clinical trials in the UK and beyond.
A clinical trial is a research study to evaluate the safety and effectiveness of a treatment or medical intervention. There are more and more clinical trials happening now for DMD.
The decision to put your child forward to take part in a clinical trial is a very personal one and should be discussed fully with your doctor.
The DMD Hub websitehas details of every current and pending trial in the UK, as well as a patient section for parents considering putting their child on a trial.
Because DMD is a rare disease, it’s likely that your GP will not have had a patient with DMD before. You may need to help them to understand what your child needs.
We recommend that you tell them about the Royal College of General Practitioners’ e-learning course on neuromuscular conditions in primary care. It will help them to better understand DMD and care for your child.
If your GP thinks your child may have DMD, they will refer them to a neuromusclar consultant.
If you don’t have a neuromuscular consultant, ask your GP to refer you to a neuromuscular clinic that is part of the North Star Network.
The Network helps clinics provide the best possible treatments to DMD patients.
Your GP can also help you to access local services for you and your child, including physiotherapy and, if you would like, counselling.
Two important things GPs can help with are:
1. Vaccinations – ask your GP to check that your child’s vaccinations are up-to-date. They will need to receive the flu and chickenpox vaccinations, as well as all recommended childhood vaccines. These will protect them from preventable illnesses which would put an extra strain on their body.
2. Regular Breathing test – people with DMD need to have one at least once a year. This is because DMD affects all muscles, including the muscles needed for breathing.
Your first appointment with the neuromuscular team can be an emotional trip. Go prepared, and write down the questions you want to ask.
The team will consist of several people who will all work together to monitor your child’s development and general physical well-being. It will include a neurologist, a physiotherapist, as well as other specialist doctors and healthcare professionals.
At your first appointment, ask for advice on the following key areas:
The risks and benefits of corticosteroids (steroids)
Physiotherapy, as regular stretching is important
Diet and exercise
Other questions you may want to ask are:
when should your child be seen by the endocrine team
how regularly will their heart be checked – this should initially be when diagnosed, then every year (depending on age of diagnosis) followed by annual checks at the age of ten based on heart test results
what counselling and therapeutic support is available
initial advice on financial support and grants
If you are interested in learning more about research, and would like your child to participate in a clinical trial, ask your consultant if the centre you are being seen is currently running trials.
Finances can be an additional worry when your child is diagnosed with DMD. As a parent or carer of a disabled child, you’re entitled to financial support from the government and your local authority. Our guide to finances and work will help you consider your needs and understand your rights.
Please note that Duchenne UK is unable to provide grants to individuals for personal equipment or care, but the guide contains a list of charities who may be able to provide financial support.
Duchenne UK was founded by two mothers whose sons were diagnosed with DMD in 2011. They understand the pain and heartbreak that a DMD diagnosis brings, and are here for other families going through the same experience.
Emily and Alex have written a letter to newly diagnosed parents and families, which we hope will bring you comfort and strength at this difficult time.
What is DMD
