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Barth Syndrome


To visit our general transition homepage click  here.

Transition in the Barth Syndrome service

You might have heard your medical teams talk about transition and be unsure about what it is. Transition is a process, which recognises that you grow up and become independent and aims to support you in this alongside information that you might need.

You will find information on these pages both for if you have just started transition and haven't yet moved or if you have already transferred to adult services.

If you are just starting this process you might be wondering what will happen. As you were born with Barth Syndrome you will have had decisions made for you by parents/carers when you were young and they would have been responsible for medicines, appointments and other aspects of your care. As you grow older you take much more responsibility for this. It doesn't mean that they can't be involved in supporting you, just that you have more control over decisions and managing your own health. The transition process will include things like:

  • Your knowledge about Barth Syndrome
  • Your treatments and medications
  • Barth Syndrome complications
  • Taking increased responsibility and control of your health
  • Living with Barth Syndrome
  • Lifestyle choices - including diet, work and relationships
  • Information about the adult service

These pages will give you more information on your condition, treatments you might have and where you can access support.