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Our Little Book for Children is a simple, beautifully illustrated guide to Barth syndrome, aimed at young children
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Litla bókin okkar fyrir börn er einföld, fallega myndskreytt leiðsögn um Barthheilkenni sem er ætlað ungum börnum
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Nuestro librito para niños es una guía sencilla y bellamente ilustrada sobre el síndrome de Barth, dirigida a niños pequeños.
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Our Little Book for Teenagers is a simple, beautifully illustrated guide to Barth syndrome, aimed at teenagers with Barth syndrome.
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Anesthesia and sedation considerations for healthcare providers who are involved in the care of Barth syndrome patients.
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A diagram of the heart with a brief description of left-sided heart failure versus right-sided heart failure
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A table of the various signs and symptoms one might experience with heart failure as a baby, a child, teen and adult
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A summary about inheritance patterns and reproduction options for carriers of Barth syndrome.
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A simple overview about how to calculate an absolute neutrophil count (ANC) developed by the Severe Chronic Neutropenia International Registry (SCNIR)
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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.
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Information about mouth ulcers, gingivitis associated with neutropenia, oral hygiene care, tooth eruption, and orthodontic considerations.
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A health professionals guide to better understand feeding issues among children with Barth syndrome during their early years of life.
Updated March 2019 -
Barth Syndrome Registry: Distinguishing disease characteristics and growth data from a longitudinal study
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Overview of neutropenia in Barth syndrome, tips for diagnosis, and neutropenia management. Reviewed by BSF SMAB clinical advisors.
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A primer about the life cycle and function of white blood cells particularly the neutrophil.
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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.
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This document provides useful tips and instruction to help children learn how to swallow pills.
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(by Mary Keeley, M.S., Lisa Merlo, PhD, & Eric Storch, PhD)
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Overview with a tip sheet for making the most of your telehealth appointment