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There appears to be only one special interest group that has its focus on Barth syndrome--Barth Syndrome Foundation, Inc. The website for this non-profit organization is: www.barthsyndrome.org . There are several international affiliates of the BSF: The Barth Syndrome Trust (UK & Europe), Barth Syndrome Foundation of Canada, and Barth Trust of South Africa.
Sincerely,
Matt Toth
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It is estimated that Barth Syndrome affects 1 in 300,000 to 400,000 individuals in the United States. Since it is a rare genetic disorder, the exact number of people affected may vary.
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Barth syndrome is named after the pediatric cardiologist Peter G. Barth, who first described the condition in 1983. He observed several boys with a distinct set of symptoms including cardiomyopathy, muscle weakness, growth delay, and neutropenia, leading to the recognition of the syndrome that bears his name.
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Barth's Syndrome is not something you get from a virus or a bacteria. It is genetic, on the X chromozome. It means that a women is mostly only a carrier, and when a carrier woman marries a amn, 50% of their boys will have Barth's Syndrome and 50% of their girls will be carriers. All the other boys and girls will be healthy. Have good health, harhanegev@gmail.com
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People with Barth Syndrome have mutations in the TAZ gene, which leads to impaired production of cardiolipin, a key biomolecule found in the inner mitochondrial membrane. This loss of cardiolipin affects the proper functioning of mitochondria, leading to the symptoms of Barth Syndrome.
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This syndrome affects male children, and is usually diagnosed at birth or within the first few months of life
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The gene affected by Barth syndrome is the TAZ (tafazzin) gene, located on the X chromosome. Mutations in this gene lead to a deficiency in an enzyme involved in cardiolipin metabolism, resulting in the characteristic symptoms of Barth syndrome such as cardiomyopathy and skeletal myopathy.
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if you want people to come on this website to ask questions, then answer them with real answers!!!!!
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Marleen Barth's birth name is Magdalena Antoinette Maria Barth.
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Thom Barth has written:
'Thom Barth' -- subject(s): Exhibitions
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Is there any treatment? There is no specific treatment for Barth syndrome. Bacterial infections caused by neutropenia can be effectively treated with antibiotics. The drug granulocyte colony stimulating factor, or GCSF, can stimulate white cell production by the bone marrow and help combat infection. Medicines may be prescribed to control heart problems. The dietary supplement carnitine has aided some Barth children but in others it has caused increasing muscle weakness and even precipitated heart failure. Only careful dietary monitoring directed by a physician or nutritionist familiar with the disorder can ensure proper caloric and nutritional intake. Source: http://www.ninds.nih.gov/disorders/barth/barth.htm
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A barth is a dialect term used in Britain for a place of shelter for cattle.
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