More Information on TMAU

TMAU is a rare metabolic disorder that affects men, women and children, from newborns to seniors, all races and ethnicities in most countries around the world. The presence of volatile trimethyl-amine (TMA) in sweat is the critical determinant, because it creates a pungent odor that emanates from the skin and surrounds the patient in an unpleasant aura.

This life-disruptive disorder is caused by both genetic and environmental factors. Living with TMAU is challenging, and it can adversely affect the livelihood of adults who have it and their families. Children with the condition could find it difficult to go through school without facing tormentors and bullies.

Currently, there is no cure and treatment options are limited.

FAQs

How do you determine if you have TMAU?

Getting tested is an important first step. A simple urine test will give you the answer; a blood test is available to provide genetic analysis. The prominent enzyme responsible for TMA N-oxygenation is the FMO3 gene.

Does TMAU have a signature odor description?

No. If you have TMAU the odor varies depending on many known factors, including the types of foods eaten, hormonal changes, other odors in the space, and our individual sense of smell and odor perceptions. The malodor has been described variously as cigarette/cigar smoky, garbagelike, feces, urine, funky, fishy and more. In a reported 15 percent of the diagnosed cases, a fishy odor persisted.

Who should get tested?

If you suffer from an unusual body odor that is volatile and pungent and negatively affecting you at work or school, then consider getting tested to rule out whether you have TMAU. Many get tested after ruling out other possibilities such as halitosis and glandular diseases. You need to know what you have before you can seek solutions.

Why is it so hard to get a TMAU diagnosis from my family doctor or general practitioner?

TMAU is a rare disorder. There used to be very limited medical knowledge readily available about most rare disorders or how to get tested for them. However, health care professionals willing to go the extra mile can now get helpful information from genetic and rare disorder databases.

For additional information contact:

Trimethylaminuria Foundation

P.O. Box 3361

Grand Central Station

New York, NY 10163

Phone: (212) 300-4168

Monell Chemical Senses Center

3500 Market Street

Philadelphia, PA 19104-3308

(215) 898-6666

www.monell.org

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