Manchester woman with one of world’s rarest conditions ‘constantly smells like FISH’

Kelly wasn’t formally diagnosed until she was 34
Share on facebook
Share
Share on twitter
Tweet

A woman with an extremely rare condition causing her to constantly smell like fish says she used to take four showers a day to mask her odour.

Kelly Fidoe-White, 41, from Oldham, Manchester, is a senior night radiographer who has lived her entire life with Trimethylaminuria (TMAU) — a disorder more commonly known as “fish-odour syndrome”.

The metabolic condition is so rare it has only been recorded 100 times in medical records*, however some medical professionals believe the real figure may be much higher and other sources put this at around 200.

Kelly first started noticing symptoms when she was six years old (Picture: Jam Press)

People suffering with TMAU regularly produce a range of strong bodily odours with examples including rotten fish, onion and faeces.

Kelly first experienced symptoms when she was six years old, noticing that her urine would smell like fish.

When puberty kicked in years later, she began to develop a prominent body odour beyond her toilet visits.

In a bid to curb the smell, she would shower several times a day but unknown to her at the time, this only sought to make her natural perfume worse.

It wasn’t until she was formally diagnosed in 2015, aged 34, that Kelly had an explanation to her unique aroma.

“People call it a curse, and I can see why,” Kelly told NeedToKnow.online.

“To sum it up in two words, it’s confusing and isolating.

“Confusing because people generally don’t like to confront body odour issues head-on so when you ask them outright they tend to tell you they don’t smell anything, but unfortunately you will then get the odd person who talks about it behind your back, rather than dealing with you face-to-face.

“As a healthcare professional, to be asked if you know you should be using soap when you wash, is really upsetting.”

Before being formally diagnosed, Kelly would shower several times a day – which only made it worse (Picture: Jam Press)

Life with the condition has also seen Kelly suffer decades of name-calling and finding ways to cope with her symptoms – such as changing her uniform twice a day and using whole cans of deodorant to cover the scent.

At one point, her mum was forced to visit her work with a fresh pair of clothes after someone complained to management about her smell.

The fear of other people noticing the scent has at times left her housebound, as well as moving to night shifts — and the radiographer also suffers from bouts of depression.

Kelly said: “It has absolutely nothing to do with personal hygiene.

“I could wash every hour of every day and it would only be a short term fix.

“In fact, it is common for sufferers to smell worse after a shower because the pores open more due to the warm water.

“It’s isolating because you don’t want to offend people with the smell so you are constantly thinking, ‘Am I sweaty? Am I over-warm? That person is coughing, is that because of me?’

“If you let it, the condition can begin to take over your thoughts.  

“I developed severe hyper-vigilance over people’s reactions to the smell.

“The worst part is feeling like you’re going crazy from it.”

Kelly wants to rid the stigma around the condition (Picture: Jam Press)

Over the years, Kelly has found unique ways to improve the symptoms, such as adopting a reduced choline diet, avoiding foods such as liver, kidney, beans, peanuts and cruciferous vegetables as they are all really good sources of choline.

This creates its own problems as insufficient choline contributes to the risk of developing neurological conditions such as fibromyalgia and Parkinson’s disease.

She said: “The whole condition is counter-intuitive in its treatment because your first thought is that it is BO [body odour].  

“So you wash more, use stronger soaps, wash your clothes using soda crystals, apply more perfume and body spray – all of which makes it worse.

“I ultimately learned that the skin needs to remain at its natural pH of 5.5 as acid breaks down TMAU as it comes through the skin – soaps, bleach and soda crystals are generally alkali.”

There is no cure for TMAU but avoiding certain foods and supplementing specific nutrient levels can lessen the symptoms, which can fluctuate over time.

Kelly has also undergone therapy and counselling for the decades of bullying she has experienced, and claims trolls body shamed her by saying the scent was due to her weight.

She said: “It has nothing to do with weight, which was thrown at me a lot.

“In fact, my smell was worst when I was at my lightest.

“Currently I believe I am relatively symptom-free.  

“This is due to a combination of supplements scientifically selected to reduce TMA production and boost TMA oxidisation and some lifestyle modifications.”

“It’s difficult because once you are labelled as someone with a BO problem some people do use it as a stick to beat you with if they don’t like you.

“I want to give a voice to my fellow sufferers, who suffer in silence because of the stigma attached to BO.

“People are generally scared to speak up for fear of being ridiculed.

“Unfortunately when people do it can be difficult to get specialist treatment as the smell is often intermittent and GPs tend to not refer based on the individuals testimony alone.

“I have found a community online, which is substantial.”