Essential Information

Barth syndrome is an unpredictable health condition and rapid decompensation is not uncommon. We cannot over emphasize that it is ultra-rare and extremally complex.

Even if the individual with Barth syndrome does not appear unwell, IV fluid boluses should be done with care, and cardiac dysfunction needs to be taken into consideration

BTHS patients are prone to hypoglycemia especially after a long fast and episodic vomiting and diarrhea. Hypoglycemia needs to be corrected with age and weight appropriate protocol.

When starting new medications, it is best to start low, increase slow, and monitor often.

The Barth Syndrome Foundation maintains a list of multidisciplinary sub-specialists with expertise in Barth syndrome who have agreed to speak DIRECTLY with peer physicians during times of crisis. Please contact us to obtain a referral to one of these physicians.

The following documents are intended to inform and advise, but are designed for educational purposes only, and do not replace medical advice from a healthcare professional.

Special care needs to be taken when an individual with Barth syndrome requires anesthesia. This sheet is important information for the anesthesiologist prior to surgery.

Diarrhea is a serious concern for an individual with Barth syndrome, this sheet may help to manage it.

Heat intolerance or oversensitivity to extreme ambient temperature is common in those with mitochondrial disorders, such as Barth syndrome. This sheet provides essential information.

To help in times of emergency, we recommend printing and carrying this Wallet card to be used when not at home, and printing, filling out, and keep current this Emergency Medical Information form which should be kept in a visible location (such as a fridge) so that vital and accurate information can be given to emergency personnel when needed.

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The Barth Syndrome Foundation of Canada is a completely volunteer, charitable foundation. We fund critical research and provide support and information to affected individuals, families, and medical professionals.