Something fish going on...
At least now I know what’s wrong
By Kelly Fidoe-white, 37, from Oldham
Kids can be cruel.
‘You stink!’ jeered one schoolmate.
‘Smelly Kelly!’ chipped in another. The snide remarks stung. ‘I’ve got fish-paste sandwiches for lunch,’ I lied, blushing.
Well, I had to think of some excuse…
Although they were unkind, my classmates were right. I’d no sense of smell myself, but I knew I stank of fish and onions.
What I didn’t know was why…
By secondary school, I washed twice daily.
But, no matter what, the odour kept turning up like…well, like a bad smell.
When it was strong, my mum Pat, 43, and big sister Joanna, 17, found kind ways to mention it.
One day, Mum had bought me an orange-scented shower gel to try. But, coming out of the shower, Joanna held her nose.
‘Now you smell of onions and oranges,’ she grimaced.
But the smell was the least of my worries. I’d kidney problems, repeated urinary infections. Plus I was born with a heart condition – aortic stenosis – which meant I’d a narrow exit to the left ventricle.
I’d need surgery one day – but, meanwhile, I couldn’t do any strenuous exercise.
Studious, I preferred staying indoors, anyway.
At 18, studying Radiography at St Martin’s University, I was feeling happy.
I got no cutting remarks there, and hoped perhaps the pong had passed with puberty. Graduating in 2001, I moved to Hereford for my first job in radiography. While there, lonely away from home, I used chat rooms – and I met a chap called, Michael, then 30. Friends first, we grew closer. In love, he never once mentioned my smell, and we married in February 2003. I’d been back and forth to doctors over the years – and, in August 2004, I had surgery to replace my aortic valve. After recovering, I got a job as a radiographer at a hospital nearer home. There, though, colleagues noticed there was something fishy about me… I’d hear them whispering before I walked into a room. Managers would pull me aside and tell me, ‘You must wash with soap, not just water.’ ‘But I wash twice a day!’ I’d protest. I could tell that they weren’t convinced, though. So I’d wash up to four times a day with scalding water, scrubbing my skin red-raw.
Mum even started bringing me in a clean uniform part way through my shifts.
I tried every product possible – even baking soda – on my armpits. Then, in 2012, I was diagnosed with pernicious anaemia – I was deficient in vitamin B12. Found in meat,
The odour kept turning up like… well, like a bad smell
fish, eggs, milk, and other dairy products, I ate more of them.
At work, I made friends with a colleague, and he’d let me know by text if the smell got too bad. Go freshen up, he’d text. Soon, just a rub of his nose became our signal.
I figured my BO was just one of those things. Until, one day, a woman on ITV’S This Morning was discussing her fish odour syndrome, which is officially called trimethylaminuria (TMAU).
The smell can vary from rotting fish to onions. It’s rare, with only 300-600 people diagnosed worldwide.
Could I have TMAU?
It was explained that TMAU happens when the body can’t break down the chemical trimethylamine, and it’s released into the person’s sweat, reproductive fluids, urine, and breath. Armed with tons of online research, I went to talk to my GP. He listened, and suggested I change my diet to avoid soy, egg yolk, dairy, potatoes and wholemeal bread. ‘But that’s everything that I’ve been eating!’ I exclaimed. A urine test confirmed that I had TMAU1 – primary TMAU. Finally, I had an answer and could start to put things right.
Scented soaps out, I now use a ph-neutral shower gel. I also take activated-charcoal tablets daily, which work as an ‘internal deodorant’ to help my gut process and neutralise odours.
I’ve since learned that stress is also a trigger for the condition.
No longer anxious at work, I explain the TMAU to people so they know that it isn’t my fault. And, on the whole, people have been really supportive.
Things are better now, but the odour will never go totally.
I’m sure more people are affected by TMAU, but are too embarrassed to seek help. But don’t let shame stop you. Getting a diagnosis, speaking out and keeping my sense of humour has turned my life around.
I explain to people so they know that it isn’t my fault