A woman has spoken about the struggles of living with a condition that causes her to constantly smell like fish.
Kelly Fidoe-White has suffered from fish-odour syndrome -Trimethylaminuria – her whole life.
The disease leaves sufferers unable to break down a certain compound in food meaning they cam small like a range of odours, including fish, onion and faeces.
Before she was diagnosed two years ago, the 36-year-old would shower up to four times a day and used whole cans of deodorant to mask the smell – none of which worked.
As a consequence, she suffers from severe anxiety and works night shifts as a radiographer to limit the mount of people she is exposed to.
‘Besides the smell itself, there are very few other symptoms at all and of course you have the side effects of anxiety, social isolation – it’s hard,’ Kelly said.
‘As far as I know, this condition affects 300 to 600 people worldwide – it’s not very well known.’
As Kelly’s body is unable to break down the compound, called choline, it disposes it in her sweat, breath and urine instead.
But as she also has no sense of smell it is difficult to manage what really affects it.
‘There is no magic pill that you can take to make it better, I personally take a cocktail of medications,’ she said.
‘One of the things they [the doctors] turn around and say to you is: ‘If it smells going in, it’s going to smell going out.’
‘So things like fish and seafood are major triggers.’
Kelly doesn’t know when she developed the problem but says she began to know something was wrong in her early school years.
‘There was more than one occasion where I would say: “I’ve had fish paste sandwiches for my lunch,” when kids would say “You smell like fish”.
‘That was difficult to deal with as a teenager.
‘I was spending a stupid amount of time in the shower just before my diagnosis. Using red hot water, scrubbing until my skin was bright red and it was just too stressful.’
It was only after her diagnosis that Kelly learned her relentless washing was making her condition worse, she now uses a PH neutral body wash for sensitive skin.
But despite her condition,Kelly, found love with husband Michael, 16 years ago.
The 45-year-old said: ‘Kelly’s smell has sometimes affected me in a negative manner but I haven’t said anything to Kelly. I’ve just kept it to myself.
‘When we were living together at the start I did notice it. But it wasn’t straight away when we first started seeing each other – it was never a problem.
‘I don’t believe she tired to hide it either.
‘Kelly wasn’t that confident when we first met – and I think the best way of me helping her with the condition is to just be supportive about the condition.
‘If that was me living with the condition, I think I would struggle to do as much as Kelly does.
‘I am sure he won’t mind me saying this, but he produces his own smell anyway!’
Since working night shifts at The Royal Oldham Hospital, Kelly has recently been more open and honest about her condition with her closest work colleagues.
She now feels confident enough to raise awareness and speak about her condition in the hope that she can destigmatise it and people can tell her what is working to calm the smell.
Kelly said: “From watching documentaries, things to started to fall into place and it sounded like it could be me when someone said it’s not just a fish odour.
‘And ultimately I ended up being tested and it came back positive.
‘I am more chilled about it now. I can’t say that if somebody complains tomorrow, I wouldn’t still find it a little bit cutting.
‘But I deal with it by educating hat person now.’