Supporting your teenager

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.

Alex aged 14 gaming Alex aged 14 gaming
Duchenne UK Family Folder open book and cover

Help with the transition to adulthood

The new DMD Transitions Folder: Guide to Adolescence and Adulthood will help you to navigate and adjust to your child’s changing needs as they grow older and enter adulthood. You’ll find the information you need to:

  • Make the most of teenage life – family life, health, education, relationships, financial support and holidays and fun
  • Prepare for the future – help your teenager gain life skills and prepare for work
  • Respond to challenges and opportunities – understand emergencies, DMD research and clinical trials

The guide is currently in progress – please get in touch with us below to pre-order a copy.

You may also find our previous Family Folder and accompanying guides useful – this was designed for newly diagnosed families but contains information that may be relevant for older children.

 

Pre-order your DMD Transitions Folder

Fill out this form to request a copy of the DMD Transitions Folder when available.

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If you are not a parent/caregiver or relative, please contact us at [email protected] We can only post folders within the UK - if you live outside the UK, you will be able to download the folder from our website.
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If your child is currently taking steroids, you may like to order a steroid alert wristband. It is designed to alert people that the wearer is steroid dependent and may need to be given steroids if they become unwell. You can find out more about this at https://dmdcareuk.org/information-leaflets
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Teenage boy talking to doctor

Puberty and testosterone treatment

If your son 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.

Puberty and testosterone leaflet
Pathfinders Neuromuscular Alliance logo

Where to get support as a teenager or adult

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.

Visit the Pathfinders website

Our resources

Educational support

Find out how to get the right educational support for your child.

Support with education Support with education
Duchenne UK Steroid wristbands Duchenne UK Steroid wristbands

Prepare for emergencies

Read our guide to preparing for emergencies when your child has DMD.

Emergency support Emergency support
A mother and boy hugging A mother and boy hugging

Support at diagnosis

Resources for when your loved one is diagnosed with DMD.

Support at diagnosis Support at diagnosis