{"id":1608,"date":"2021-11-08T14:40:29","date_gmt":"2021-11-08T14:40:29","guid":{"rendered":"https:\/\/barthsyndrome.ca\/?page_id=1608"},"modified":"2022-08-17T20:35:55","modified_gmt":"2022-08-17T20:35:55","slug":"home","status":"publish","type":"page","link":"https:\/\/barthsyndrome.ca\/","title":{"rendered":"Home"},"content":{"rendered":"

Enhancing<\/span> the <\/span><\/span>lives<\/span> and <\/span><\/span><\/span>outcomes<\/span> <\/span><\/span>of<\/span> <\/span><\/span>Canadian<\/span> individuals and families affected by Barth syndrome.<\/span><\/span><\/span><\/h2><\/div><\/div><\/div>
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Enhancing<\/span> the <\/span><\/span>lives<\/span> and <\/span><\/span><\/span>outcomes<\/span> <\/span><\/span>of<\/span> <\/span><\/span>Canadian<\/span> individuals and families affected by Barth syndrome.<\/span><\/span><\/span><\/h2><\/div><\/div><\/div>
<\/div><\/div><\/div><\/div>

Enhancing<\/span> the <\/span><\/span>lives<\/span> and <\/span><\/span><\/span>outcomes<\/span> <\/span><\/span>of<\/span> <\/span><\/span>Canadian<\/span> individuals and families affected by Barth syndrome.<\/span><\/span><\/span><\/h2><\/div><\/div><\/div>
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<\/i>

BARTH INDIVIDUALS & FAMILIES<\/a><\/p>\n<\/div>

Our program includes information and resources as well as advocacy assistance for families.<\/p>\n<\/div><\/div><\/div>

<\/span><\/span><\/span>
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HEALTHCARE<\/span>
\nPROVIDERS & RESEARCHERS<\/span><\/a><\/p>\n<\/div>

Information related to diagnosis, treatment, and knowledge for clinician review.<\/p>\n<\/div><\/div><\/div>

<\/span><\/span><\/span>
<\/i>

BARTH SYNDROME
\nONLINE STORE<\/a><\/p>\n<\/div>

There is no minimum order, and 20% of each purchase becomes a donation to BSFCa.<\/span><\/p>\n<\/div><\/div><\/div>

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BSF CANADA<\/span>
\nNEWS & EVENTS<\/span><\/a><\/p>\n<\/div>

Keep up-to-date on relevant news that impacts the Barth syndrome community at-large.<\/p>\n<\/div><\/div><\/div>

LEARN HOW WE HELP<\/a><\/b><\/p>\n<\/div><\/div><\/div>

VIEW OUR RESEARCH<\/a><\/b><\/p>\n<\/div><\/div><\/div>

SHOP HERE NOW!<\/a><\/b><\/p>\n<\/div><\/div><\/div>

READ LATEST NEWS<\/a><\/b><\/p>\n<\/div><\/div><\/div><\/div><\/div>

<\/span><\/span><\/span>
<\/i>

BARTH INDIVIDUALS & FAMILIES<\/p>\n<\/div>

Our program includes information and resources as well as advocacy assistance for families.<\/p>\n<\/div>

LEARN MORE<\/span><\/a><\/div><\/div><\/div>
<\/span><\/span><\/span>
<\/i>

HEALTHCARE
\nPROVIDERS & RESEARCHERS<\/p>\n<\/div>

Information related to diagnosis, treatment, and knowledge for clinician review.<\/p>\n<\/div>

LEARN MORE<\/span><\/a><\/div><\/div><\/div>
<\/span><\/span><\/span>
<\/i>

BARTH SYNDROME<\/a>
\nONLINE STORE<\/p>\n<\/div>

There is no minimum order, and 20% of each purchase becomes a donation to BSFCa.<\/span><\/p>\n<\/div>

LEARN MORE<\/span><\/a><\/div><\/div><\/div>
<\/span><\/span><\/span>
<\/i>

BSF CANADA
\nNEWS & EVENTS<\/p>\n<\/div>

Keep up-to-date on relevant news that impacts the Barth syndrome community.<\/p>\n<\/div>

LEARN MORE<\/span><\/a><\/div><\/div><\/div><\/div><\/div>

WELCOME TO THE<\/span> <\/b><\/span><\/p>\n<\/div>

Barth Syndrome Foundation of Canada<\/h2><\/div>

When you or your loved one is first diagnosed with Barth syndrome<\/a> (BTHS), you can feel overwhelmed. You may not even have heard of Barth syndrome until now. Learning all you can is a major step toward taking charge of your illness \u2014 and your life.<\/p>\n

These pages are intended to help you understand more about the diagnosis and treatment of Barth syndrome, and its impact on the day-to-day lives of patients and their families. The better informed you are about Barth syndrome, the more equipped you’ll be to participate as an active member of your healthcare team.<\/p>\n<\/div>

LEARN MORE<\/span><\/a><\/div><\/div><\/div>
<\/span><\/div><\/div><\/div><\/div><\/div>

WHAT IS<\/strong><\/span><\/p>\n<\/div>

Barth Syndrome?<\/h2><\/div>

Barth syndrome is an ultra-rare, life-threatening, genetic disorder primarily affecting males all over the world. Symptoms in varying degrees of severity can include:<\/p>\n<\/div><\/div><\/div>

Cardiomyopathy<\/h3>
<\/i><\/div><\/div>
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\n

Hypertrophic or dilated,
\nsometimes with left ventricular noncompaction, arrhythmia.<\/p>\n<\/div><\/div><\/div>

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Feeding Problems<\/h3><\/a><\/div>
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\n

Difficulty sucking, swallowing or chewing\/ nausea & vomiting.<\/p>\n<\/div>

<\/div>Read More about Feeding Problems<\/a>
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Growth Delay<\/h3>
<\/i><\/div><\/a><\/div>
<\/div>
\n

Extremely short stature in early years, followed by accelerated growth in mid to late puberty.<\/p>\n<\/div>

<\/div>Read More About Growth Delay<\/a>
<\/div><\/div><\/div>

Neutropenia<\/h3>
<\/i><\/div><\/div>
<\/div>
\n

Can be chronic, intermittent
\nor cyclic; causes life threatening infections.<\/p>\n<\/div><\/div><\/div>

<\/div><\/div><\/div><\/div>
<\/lottie-player><\/div><\/div><\/div><\/div>
<\/i><\/div>

Low Muscle Mass & Muscle Weakness<\/h3><\/div>
<\/div>
\n

Under-developed muscles result in floppy limbs, weak muscles and exercise intolerance.<\/p>\n<\/div><\/div><\/div>

<\/i><\/div>

Extreme Fatigue and Reduce Energy<\/h3><\/div>
<\/div>
\n

Severe lack of stamina unrelated to cardiac disease, possibly due to low muscle tone. Can be chronic.<\/p>\n<\/div><\/div><\/div>

<\/div><\/div><\/div><\/div>

Cardiolipin Abnormalities<\/h3>
<\/i><\/div><\/div>
<\/div>
\n

Mutations in the tafazzin gene (which causes Barth syndrome) lead to a decreased production of an enzyme responsible for the remodelling of cardiolipin, a lipid that is important in energy metabolism.<\/p>\n<\/div><\/div><\/div>

<\/div><\/div><\/div><\/div>
<\/i><\/div>

Mitochondrial Dysfunction<\/h3><\/div>
<\/div>
\n

The defective remodelling of cardiolipin affects the inner membrane and function of the mitochondria.<\/p>\n<\/div><\/div><\/div>

<\/div><\/div><\/div><\/div><\/div><\/div>

WHAT IS<\/strong><\/span><\/p>\n<\/div>

Barth Syndrome?<\/h2><\/div>

Barth syndrome is an ultra-rare, life-threatening, genetic disorder primarily affecting males all over the world. Symptoms in varying degrees of severity can include:<\/p>\n<\/div><\/div><\/div>

<\/i><\/div>

Cardiomyopathy<\/h3><\/div>
<\/div>
\n

Hypertrophic or dilated,
\nsometimes with left ventricular noncompaction, arrhythmia.<\/p>\n<\/div><\/div><\/div>

<\/i><\/div>

Feeding Problems<\/h3><\/a><\/div>
<\/div>
\n

Difficulty sucking, swallowing or chewing\/ nausea & vomiting.<\/p>\n<\/div>

<\/div>Read More About Feeding Problems<\/a>
<\/div><\/div><\/div>
<\/i><\/div>

Growth Delay<\/h3><\/a><\/div>
<\/div>
\n

Extremely short stature in early years, followed by accelerated growth in mid to late puberty.<\/p>\n<\/div>

<\/div>Read More About Growth Delay<\/a>
<\/div><\/div><\/div>
<\/i><\/div>

Neutropenia<\/h3><\/div>
<\/div>
\n

Can be chronic, intermittent
\nor cyclic; causes life threatening infections.<\/p>\n<\/div><\/div><\/div>

<\/i><\/div>

Low Muscle Mass & Muscle Weakness<\/h3><\/div>
<\/div>
\n

Under-developed muscles result in floppy limbs, weak muscles and exercise intolerance.<\/p>\n<\/div><\/div><\/div>

<\/i><\/div>

Extreme Fatigue and Reduce Energy<\/h3><\/div>
<\/div>
\n

Severe lack of stamina unrelated to cardiac disease, possibly due to low muscle tone. Can be chronic.<\/p>\n<\/div><\/div><\/div>

<\/i><\/div>

Cardiolipin Abnormalities<\/h3><\/div>
<\/div>
\n

Mutations in the tafazzin gene (which causes Barth syndrome) lead to a decreased production of an enzyme responsible for the remodelling of cardiolipin, a lipid that is important in energy metabolism.<\/p>\n<\/div><\/div><\/div>

<\/i><\/div>

Mitochondrial Dysfunction<\/h3><\/div>
<\/div>
\n

The defective remodelling of cardiolipin affects the inner membrane and function of the mitochondria.<\/p>\n<\/div><\/div><\/div>

<\/div><\/div><\/div><\/div><\/div><\/div>
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NEWSLETTERS & STORIES<\/strong><\/span><\/p>\n<\/div>

From the Foundation<\/h2><\/div><\/div><\/div>
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