Transition was good. Everyone was friendly, helpful and caring
Support
As part of growing up and becoming more involved in your healthcare, 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 Barth Syndrome and what this mean for adult life, such as the impact some of the symptoms can have on things you would like to do.
Your Barth team want to support you to do the things important to you. Having Barth Syndrome may mean that there are extra things to consider, such as how fatigue or pain is managed. It is important that you do the things that matter to you in a way that works for you and your body.
We know that having a diagnosis of Barth Syndrome can challenges many aspects of life in different ways, and at different points throughout childhood, adolescence and adulthood. Depending on your age and stage, you may have different feelings about Barth Syndrome and how it impacts your life. It is okay to feel worried or frustrated, this is something everyone with a long-term condition experi ences at some point.
If you would like more support around these feelings and experiences, the Barth team can help you with this. We can help with things like 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, social worker, physiotherapist or psychologist in the Barth Syndrome team. You can contact the team on via email BarthPatientsSupport@uhbw.nhs.uk or phone 07795507294 (This is a voicemail telephone service where you can leave a message. Messages are checked between 9am to 5pm, Tuesday to Friday).
There are also resources on our website about supporting the wellbeing of teenagers. You can find these here.
Another place to find out information about living with Barth Syndrome is 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. Connecting with others who share your experiences can also be helpful. This is something theBarth Syndrome Trust can help with. There is also the Barth Syndrome Foundation.
For support and information about having a heart condition there is also YHeart and the Sommerville Foundation.
