When you or your loved one is first diagnosed with Barth syndrome (BTHS), you can feel overwhelmed. You may not even have heard of Barth syndrome until now. Learning all you can is a major step toward taking charge of your illness — and your life.
These pages are intended to help you understand more about the diagnosis and treatment of Barth syndrome, and its impact on the day-to-day lives of patients and their families. The better informed you are about Barth syndrome, the more equipped you’ll be to participate as an active member of your healthcare team.