What should parents and siblings of people with Barth syndrome know?

Specific strategies for navigating life with a boy who has Barth syndrome can be very helpful. These include things like coping with pain, empowering siblings, and instilling hope. The Barth Syndrome Foundation has plenty of details in a fact sheet.

Other Questions About Barth syndrome

• Why does Barth syndrome cause heart problems?
• Who else in my family should have testing for Barth syndrome?
• What specialists should I see for Barth syndrome?
• What should parents and siblings of people with Barth syndrome know?
• What should I know about the diet for children with Barth syndrome?