Life changes for every parent when their child enters adolescence, but DMD brings additional changes.
We provide guidance and support for parents and families on how to support young people with DMD as they grow older and face new challenges, as well as new opportunities to build a good future.
The new DMD Family Folder: Guide to Adolescence and Adulthood is a comprehensive guide that will help you to navigate and adjust to your child’s changing needs as they grow older and enter adulthood. It is suitable for families of children and young people aged 11 and over. You’ll find the information you need to:
The guide is available as a digital download or hard copy. If you are a parent/caregiver of a young person with DMD or a healthcare professional, you can also order a free printed copy below. Please note that we can only post within the UK.
You may also find our previous Family Folder and accompanying guides useful – these were designed for newly diagnosed families but contain information that may be relevant for older children.
As a parent or caregiver of a disabled child, the support you’re entitled to from the Government and your local authority will change as your child grows up. They may receive personal budgets for health, social care or education and may be eligible for a grant towards a wheelchair or home adaptations.
Download our guide to finance and work for information on how to access financial support and manage your work alongside caring for your child.
If your child is taking steroid medicine for DMD, it is likely that his puberty will start late, not start, or start but not progress normally. Your doctor may recommend testosterone treatment to support normal puberty. Find out more by downloading DMD Care UK’s information leaflet.
Our partners at Pathfinders Neuromuscular Alliance, a charity run by and for adults with neuromuscular disorders, can provide further support for teenagers and adults with DMD.
Pathfinders campaign for improved standards of health and social care and provide advice, guidance and support to teenagers and adults on issues such as independent living, housing, employment and welfare rights.
Find out how to get the right educational support for your child.Support with education
Read our guide to preparing for emergencies when your child has DMD.Emergency support
Resources for when your loved one is diagnosed with DMD.Support at diagnosis