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It takes a great deal of courage for a sufferer to take part in an interview like this. Yet, sufferer after sufferer in multiple countries have mustered up the courage to do so because of the pressing need not only to raise awareness in an effort to minimize the social ostracism inflicted upon sufferers, but also to raise awareness in the scientific and medical society around the world to encourage research and appropriate medical treatment for this condition.
The following are excerpts from the article:
When were you formally diagnosed?
In 2007 I was researching my condition on the internet when I came across a support group run by someone in the U.K. who has TMAU. I discovered an entire anonymous network and a name for my condition. I think that community slowly pulled me out of the depression and encouraged me to go and get tested, which I finally did about a year ago...
I waited from 2007 to 2013 to actually bite the bullet and take the test. There’s a lot more research being done in the U.K. than there is here in the USA. There’s a clinic in Cleveland where the tests are conducted. I went through MEBO (a patient advocacy group for systemic body odor and halitosis), and they collected a batch of tests for me. They then send out frozen urine samples to the clinic. It takes about a month to hear back, and when I got the results … well, honestly, I was afraid to look at the results. I had mixed emotions, but when I saw that I had TMAU I just cried and cried. I felt validation for all that I had been through. I wanted to pick up the phone and call everybody and say, "See, this is why I smell bad. This is why I've been mistreated, this is a real condition, and it’s called trimethylaminuria!" It was liberating. It was also sad that I did have a name for the odor problem and that, yes, I really smell that bad... I found that I could control my odor through the diet. I gained my self-confidence and my life back! So getting tested was the best thing I ever did. I only wish I had done it sooner.
On behalf of our international MEBO Community, I would like to thank this brave woman for coming forward and telling our story.
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María de la TorreFounder and Executive Director
A Public Charity
maria.delatorre@meboresearch.org
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