The story of belinda
I am a woman living with a disorder called Trimethylaminuria. Here’s a brief description by NHS Choice:
“Trimethylaminuria is an uncommon genetic disorder that causes a strong body odour usually described as like rotting fish, faeces or garbage.The odour is created when the body isn’t able to process trimethylamine. This is a smelly chemical that’s produced in the gut, particularly when certain choline-rich foods are digested.”
During my childhood and teenage years, I don’t think I emitted bad smells because nobody ever made a comment that I did and I was always surrounded by many friends. Then at university I started to have bad breath, which I noticed myself. It only happened occasionally and I felt that with good oral hygiene and chewing gum, I was fine! But then my feet started to smell really badly. Then on top of the halitosis and bad feet odour, I started to also have underarms odours. At that point, I’m sure people who were near me could notice some of the smells I emitted, but luckily I’d never heard a bad comment towards me and I continued to have boyfriends and lots of friends, so my social life was very good.
Things were controllable when I used commercial products such as antiperspirants and foot deodorants, but I was always self-conscious and worried people might find me dirty and smelly. In the meantime, I visited general practitioners, dentists, gastroenterologists and had all sorts of tests done. But they always came back with the same outcome: all clear! I was getting frustrated because I knew something was wrong with me. How could I emit bad odours despite being very hygienic?
Worse still, as the years went by, my odours increased in intensity and numbers: I then had a fishy-type of odour on my chest, I also emitted a very unpleasant smell behind my ears. And about 15 years ago, I started emitting fart, rotten eggs, feces and sewage smells from my breath. The stench could fill an entire large room; it would either be like a sudden burst of gas, or I would simply smell of those disgusting odours from the moment I got out of bed…
Needless to say that at that point I would hear cries of disgust from my colleagues, pupils, strangers in the street, public transport or shops. It was on a daily basis. People would spray perfume in class, open windows, hide their nose/face under a cloth. Once, a girl even started vomiting as she complained about an ‘unbearable stench’. Although I’ve never been insulted directly, people commented that ‘someone’ needed to wash after going to the toilet. It all became so bad I decided to quit teaching and work from home.
For 10 years I had to endure dozens of tests (colonoscopy, barium meals, endoscopy, several visits to the UTI clinic, etc.) and even had an unnecessary sinus operation to find out the cause of my foul odours. None of the tests had helped determine what I was suffering from, until I found out about TMAU, through my own internet research. I had a test and was finally diagnosed with Primary Trimethylaminuria (TMAU 1). I try to manage my symptoms by avoiding red meat, poultry, brassica, eggs, dairy, etc. and take supplements such as probiotics and vitamin B2. But it is very difficult for me to be consistent with it because it is too restrictive.
“For several years, the community of sufferers of metabolic disorder Trimethylaminuria have been struggling to raise awareness of the condition and to convey the severity of the symptoms to health professionals and the general public alike. Trimethylaminuria (TMAU) causes the sufferer to emit repellent, pungent odours, which render the sufferer a social misfit. The TMAU sufferer usually struggles at school and in the workplace and often suffers financial loss as a consequence. TMAU sufferers are often unemployed or under-employed because of their socially alienating conditions.” I have heard of a fellow sufferer who committed suicide, because of this wretched disorder.
Personally, I am still alive only because I got appropriate mental support. But life is not fun: I avoid going to crowded places or pubic transport because I dread people’s reactions to my foul odours. I don’t feel that I have a good quality of life anymore: I exist and try my best to improve my life, but it’s not always easy. Not too long ago I was on the brink of suicide, but thankfully I’m still alive because I saw psychiatrists. Now all that I have is hope that there will be a cure soon…
Please don’t judge, shun people who have an odour issue: you just don’t know what medical disorder they might be suffering from, and the type of distress the condition brings to their life. Be kind. Thank you!