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Transition was good. Everyone was friendly, helpful and caring

TRANSITION

Support

As part of growing up and becoming more independent in your life you might have lots of questions, feelings and many different thoughts about living with Barth Syndrome. There may be times when you want to know more about what it might be like to grow up with Barth syndrome and the impact some of the symptoms can have on things you would like to do in your life. Its important to think about things that are important to you and talk to your family and team about ways you can do activities or a job that you want but in a way that works for your body. Most you people say you can do most of the things you want but maybe not as often as you would like to.  

It can be hard to know how you feel at times, as having Barth syndrome may mean you meet new friends and go to different places but you may also feel at times sad or worried. There may be times when you feel you would like more support.   We have lots of resources on our webpage with tips and suggestions about coping if you feel worried. You can find these here.  

If you have questions about how to cope with how you are feeling or about living more independently you can talk to your clinical nurse specialist, doctor, dietician, occupational therapist, physiotherapist or psychologist in the Barth Syndrome team. You can contact them on barthsyndromeservice@uhbristol.nhs.uk. To telephone please contact the Barth Syndrome Service administrator on 0117 342 9335 or the Clinical Nurse Specialist on 0117 3420198/07795507294;

Sometimes talking to others with the same condition can help. If you have questions about living with Barth Syndrome you can find out more from the Barth Syndrome Trust - this has been developed by a group of families in the UK affected by Barth syndrome who know first-hand what it's like to have this condition. There is also the Barth Syndrome Foundation.

You may find that you have made some good friends with other young people with Barth Syndrome and they can also be great people to talk to about how it feels to live with Barth syndrome and how you can do the things that are important to you if your energy levels are lower and your symptoms sometimes affect how much you can do.

For support and information about having a heart condition there is also YHeart and the Sommerville Foundation.