Duchenne in the transition to adulthood
Guidance on managing Duchenne during the transition from adolescence to adulthood.
Growing up is exciting, and sometimes a little overwhelming. If you have Duchenne, you’ll face extra changes as you move from childhood to adult life.
Here is some guidance to help you plan ahead and feel confident about the future.
What does transition mean?
Transition is the process of moving from child to adult life. It’s not just about age – it’s about taking on more responsibility and making your own choices.
It includes changes in health care, education, work, and where you live. Good planning makes the move smoother and less stressful.
Start early
Begin talking about adulthood in your early teens. This gives you time to prepare. It’s not just about age – it’s about taking on more responsibility and making your own choices.
Share your hopes and goals with your family and care team. Make sure your Education, Health and Care Plan (EHCP) includes transition planning. Ask your doctors when you’ll move to adult services and what that will look like.
Personal care
You may need help from personal assistants (PAs) or care workers as you get older which makes it a good idea to start getting used to support from people outside your family. This can feel strange at first, but it gives you more independence and freedom.
Life skills, work and where to live
Independence starts with small steps. Practice skills like:
- Managing money and budgeting.
- Using public transport or planning journeys.
- Cooking simple meals or ordering food.
- Learn how to organise care and support. This will help you feel in control.
- Try doing things on your own when possible – it builds confidence.
- Think about what you want to do after school – college, university, apprenticeships or volunteering.
- Ask for careers advice that focuses on your strengths and interests.
- Keep your EHCP updated as your goals change.
- Explore online learning and flexible options if travel is difficult.
- Some people stay at home. Others move into supported housing or adapted flats.
- Talk about what feels right for you and your family.
- Plan early – housing adaptations and funding can take time.
Your role as a young adult
Your care, education and future.
Find what works for you.
More guidance is available
Email info@duchenneuk.org to order Duchenne UK's Guide to Adolescence and Transition to Adulthood for more information.
