Duchenne in Adolescence
Guidance for families on managing Duchenne during adolescence.
Adolescence is an exciting time. Your teenager is growing up, making friends, and thinking about the future.
If they have Duchenne, this stage brings extra challenges—but also many opportunities.
Here we explain what you can do during your child’s adolescence to ensure that they can benefit from and enjoy as many of those opportunities as possible.
What to expect
Adolescence means big changes — physical, emotional, and social. They’ll face the same teenage issues as everyone else — friendships, confidence, and identity.
School
Your teenager will start secondary school, maybe college later
Independence
They’ll want more independence and responsibility
Puberty
Puberty may be delayed because of steroids
Muscle weakness
Muscle weakness will increase, and they may start using a wheelchair full-time
Taking the lead
Supporting your teenager starts with how you communicate. Here are some tips:
Shape a good life
Encourage your teenager to dream big. Education, hobbies, volunteering, and friendships all matter
Start early
Talk about hopes and goals from age 13 or 14. Don’t wait until exams or transition meetings
Seek opportunities
Work with schools and healthcare teams to make plans that match your teenager’s ambitions
Enjoy the journey
Make time for fun and family moments
Health and wellbeing
What you can do during your child's adolescence:
Regular check-ups
Regular check-ups are essential — heart, lungs, spine, and bones
Independence
Steroids help slow muscle damage, but can delay puberty and affect growth
Ask about hormone checks
Ask about hormone checks and treatment if puberty is late
Watch for breathing changes
Watch for breathing changes — ventilation may be needed at night
Mental health matters
Mental health matters. Talk openly about feelings and seek support early
School, home and social life
- Work with teachers and the Special Educational Needs Coordinator (SENCO) to plan support. Ask for an Education Health Care Plan (EHCP) if you live in England.
- Encourage inclusion in school life—clubs, hobbies, and friendships
- Plan ahead for GCSEs, college, and careers
- Free advice is available from Decipha for education and social development
- Help your teenager build confidence and social skills
- Encourage hobbies—music, gaming, art, sport
- Talk about friendships, dating, and relationships
- Prepare for conversations about sex and identity· Support them in staying safe online and offline
- Adapt your home gradually—ramps, hoists, accessible bathrooms
- Assistive technology can help with independence—voice controls, smart devices
- Plan for wheelchair use early
- Encourage life skills—money management, decision-making, and self-care
Looking after yourself
Caring for a teenager with Duchenne is demanding, it's vital you get the support you need:
Asking for help
Take breaks and ask for help
Counselling
Talk to a counsellor if you need support
Family time
Make time for your partner and other children
More guidance is available
Email info@duchenneuk.org to order a copy of the Duchenne UK Family Folder for more guidance on this stage of your teenager's life.
