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Monday, August 12, 2013

Survey - Message from the TMAU.ORG.UK Management

TMAU.ORG.UK has been serving the TMAU community since 2009 with their website and forum, which includes inspirational stories, interviews with experts, press releases/interviews, videos, and general TMAU tips.

As a member of this group, I have received an email from The TMAU Forum Management notifying us of a survey sufferers who have tested positive for TMAU are invited to participate in. I have copied and pasted below the information The Management has sent me with the links exactly as they noted. All persons with TMAU are encouraged to assist in this survey.



Hi All,

Please see the below email from Min Li, MD, PhD
St.Paul's Hospital,Vancouver,B.C.

I would be grateful if all members could take a minute and respond directly
to either:

minli@hotmail.com or Dr. Ramesh Saeedi's rsaeedi@providencehealth.bc.ca





Dear TMAU website members,

We have previously described a patient with trimethylaminuria (TMAU) who
also has very high cholesterol level due to heterozygous familial
hypercholesterolemia (Journal of Canadian Medical Association Journal
2011;183:929-931). A CT angiogram (an x-ray of the heart vessels after
injection of dye in veins) preformed in this 71 year-old patient revealed
no evidence of hardening of arteries in her blood vessels. This was very
surprising in view of the fact that she was not treated (most patients with
this condition develop early heart disease). A recent paper published in
Nature (Nature 2011; 472:57-65) suggested that trimethylamine N oxide (TMO)
plays an important role in the development of heart and blood vessels
disease. Based on these observations, we think that individuals with TMAU
may be protected against heart disease because of decreased production of
TMO in this condition.

To test this idea, we need more information. Specifically, we would like to
get information regarding the frequency and severity of heart disease in
patients with TMAU. Could you kindly supply the following information?

• Have you ever been diagnosed with heart disease? If yes, at what age?
• Have your family members been diagnosed with heart disease? If yes, at
what age?
• Have you ever been diagnosed with high blood pressure, and diabetes
(elevated blood sugar)?
• Have you ever smoked?

This information is important for us to understand the role of TMO in the
development of heart and blood vessel disease. All the information gathered
will be confidential. No names will be published. Thank you for your help.

Sincerely,


Jiri Frohlich, MD, FRCPC
Min Li, MD, PhD
Ramesh Saeedi, MD, PhD

Healthy Heart Program, St. Paul's Hospital, Vancouver, BC, Canada
Department of Pathology and Laboratory Medicine, the University of British
Columbia, Vancouver, BC, Canada

--
Thanks, The Management

María


María de la Torre
Founder and Executive Director

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