Our Little Book for Children is a simple, beautifully illustrated guide to Barth syndrome, aimed at young children

Litla bókin okkar fyrir börn er einföld, fallega myndskreytt leiðsögn um Barthheilkenni sem er ætlað ungum börnum

Nuestro librito para niños es una guía sencilla y bellamente ilustrada sobre el síndrome de Barth, dirigida a niños pequeños.

Our Little Book for Teenagers is a simple, beautifully illustrated guide to Barth syndrome, aimed at teenagers with Barth syndrome.

Anesthesia and sedation considerations for healthcare providers who are involved in the care of Barth syndrome patients.

A one page overview of the cardiac aspects of Barth syndrome.

Overview of common tests and procedures for the person who has Barth syndrome

A brief description of heart failure

A diagram of the heart with a brief description of left-sided heart failure versus right-sided heart failure

A table of the various signs and symptoms one might experience with heart failure as a baby, a child, teen and adult

Diarrhea can be very dangerous for anyone of any age who has Barth syndrome. This fact sheet provides facts that one should know about managing diarrhea in Barth syndrome.

Information about mouth ulcers, gingivitis associated with neutropenia, oral hygiene care, tooth eruption, and orthodontic considerations.

A summary about inheritance patterns and reproduction options for carriers of Barth syndrome.

A primer about the genetics and inheritance of Barth syndrome.

Barth Syndrome Registry: Distinguishing disease characteristics and growth data from a longitudinal study

Overview of neutropenia in Barth syndrome, tips for diagnosis, and neutropenia management. Reviewed by BSF SMAB clinical advisors.

A simple overview about how to calculate an absolute neutrophil count (ANC) developed by the Severe Chronic Neutropenia International Registry (SCNIR)

A primer about the life cycle and function of white blood cells particularly the neutrophil.

Guidance for administering cornstarch at bedtime / overnight fasting.

A health professionals guide to better understand feeding issues among children with Barth syndrome during their early years of life.
Updated March 2019

Nutrition is a complicated challenge with Barth syndrome. This document provides a brief overview of some of the feeding issues people with BTHS encounter throughout their lives.

Heat intolerance or oversensitivity to extreme ambient temperature is common in those with mitochondrial disorders, such as Barth syndrome. Learn more about these risks and precautionary measures to prevent heat related injury.

This document provides useful tips and instruction to help children learn how to swallow pills.

(by Mary Keeley, M.S., Lisa Merlo, PhD, & Eric Storch, PhD)

Overview with a tip sheet for making the most of your telehealth appointment