Resources for Families
Our affiliate in France has created a number of important resources for children and teenagers affected by Barth syndrome:
Our affiliate in the United Kingdom, in conjunction with the Bristol NHS Barth Syndrome Service has also created several important resources for affected individuals:
Resources for Parents, Guardians and Families:
This link to BSF provides you with a series of videos to introduce you to some people who have gone through the challenges of living with Barth syndrome whether as a parent, grandparent, or carrier. More videos related to Barth syndrome can be viewed here.
Families can also interact through the BSF ‘Family ListServ‘ which is a forum where healthcare providers and families engage in open discussions on the many aspects of this disorder and its treatment. It is an immediate educational resource for families. Please contact BSF for more information on how to join our ListServ.
General documents (many courtesy of BSF):
- Glossary of Related Terms
- Barth syndrome FAQs (also in Spanish – Preguntas frecuentes (FAQ) respecto al síndrome de Barth)
- Wallet card (when travelling) and Emergency Medical Information should be filled in and kept by the phone.
- Care Plan for School Age Children
- Barth syndrome Education Guide from Barth Syndrome UK and a video called Educational Issues for a Child with Barth syndrome from BSF.
- Growth (Distinguishing disease characteristics and growth data from a longitudinal study from the Barth Syndrome Registry)
- Professional Healthcare Brochure: a brochure for both families and doctors. If you would like a printed copy, please contact us.
- Transitions: information related to issues and considerations transitioning from childhood to adolescence to adulthood.
More specific documents concerning aspects of Barth syndrome
(most courtesy of BSF):
Please remember that these sheets are designed for educational purposes only, and do not replace medical advice from a healthcare professional.
- Diarrhea (also in Spanish – Tratamiento de Enfermedades con Diarrea en Pacientes con Síndrome de Barth)
- Oral Hygiene
- Female Carriers of Barth Syndrome Information Sheet
- Genetics (also in Spanish – Genética del síndrome de Barth)
- NEW – Cardiovascular Information sheets
- Determining Absolute Neutrophil Count (ANC)
- Neutropenia (also in Spanish – Neutropenia en síndrome de Barth)
- White Blood Cell Primer
- Cornstarch (also in Spanish – Maicena)
- Nutrition (also in Spanish – Nutricion y Alimentacion)
- Pill Swallowing Tips
- Practical Tips for Parents and Affected Individuals
- Strategies for Navigating Life for Parents and Siblings of Boys with Barth Syndrome (by Mary Keeley, M.S., Lisa Merlo, PhD, & Eric Storch, PhD)
- Virtual Care Doctor Appointments Overview and Virtual Care Checklist