By Danny Baggott @Dan_Baggie
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Videographer / director: Thomas White
Producer: Danny Baggott, Ellie Winstanley
Editor: Marcus Cooper
Kelly Fidoe-White, from Oldham, Greater Manchester, has lived her entire life with Trimethylaminuria – a disorder more commonly known as 'fish-odour syndrome.'
People suffering with the metabolic condition regularly produce a range of strong bodily odours including rotten fish, onion and faeces - Kelly describes her own smell as ‘fishy-oniony.'
After receiving numerous complaints at work over the years about her odour, the 36-year-old suffers with severe anxiety and predominantly works night shifts at her job as a radiographer to limit the amount of people she is exposed to.
At one stage, Kelly was having four showers a day, changing her uniform twice and using whole cans of deodorant to try and mask the smell – none of which worked.
Kelly said: “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.
“As far as I know, this condition affects 300 to 600 people worldwide – it’s not very well known.”
Kelly’s condition means her body is unable to break down certain compounds found in foods that contain a substance called choline.
This results in the body disposing these compounds in a person’s sweat, breath and urine instead – emitting the most pungent of smells that Kelly herself cannot detect.
She said: “Having no sense of smell, I don’t know with me what really affects it.
“There is no magic pill that you can take to make it better, I personally take a cocktail of medications.
“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’s lack of smell is an unfortunate coincidence and is not part of the condition.
Despite only receiving a diagnosis two years ago, Kelly doesn’t know whether it was passed to her genetically or she developed it during her later youth – either way, she began to notice something was wrong during her early school years.
Kelly said: “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.”
Kelly’s mother, Sandra Fidoe, added: “The fact that she was bullied about it made it ten times worse for her and certainly for me. It bothered me.”
Kelly started seeing a doctor in her late teens, but nobody could diagnose her. After researching her symptoms and watching documentaries, she pushed doctors for an answer and was diagnosed with Trimethylaminuria in 2015.
Learning more about her condition led to her discovering that the copious amount of scented deodorants she was using and the relentless showering was actually making her skin react, which caused her odour to be stronger.
Now, Kelly uses Seba-Med body wash, which is PH neutral and much more sensitive for her skin. She also takes regular medication including; daily B-2 tablets which enhances her body’s ability to metabolise the choline in her diet and Acidophilus, which is a pro-biotic that rebalances the bacteria throughout the body.
On top of that, she takes Activated Charcoal once a day after she has eaten to clean out her digestive system.
Thankfully for Kelly, she found love online 16 years ago with her now husband Michael who makes things easier for her.
Michael, 45, 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.”
Kelly added: “Michael has helped me to cope by making me see the funny side of the condition.
“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.
Faysal Bashir works alongside Kelly as a CT/MR radiographer.
He said: “You could trace Kelly’s smell up the corridor. It’s quite a strong, distinct smell you get from Kelly.
“When Kelly told me about her condition I didn’t take it in for some reason and so I have always called it ‘fishiyatitus.’
“I have had many complaints about Kelly’s smell to me and from a variety of staff in the department.
“It’s hard when you get these complaints as Kelly is a good friend.
“But working with Kelly for two years as my night buddy means we have a good communication where I could tell her to go and freshen up.”
Asha Feroz, a diagnostic radiographer who also works with Kelly, said: “Certain people do make comments.
“It was upsetting how people were dealing with it and at that point, Kelly wasn’t herself.
“I have got used to the smell. So it doesn’t affect my work at all.”
As much as Kelly’s friends and family have helped her through the hardships she has faced in life, it was the final diagnosis she received that allowed her to start accepting the condition with a sense of closure.
And now Kelly 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 that person now.”