Radiographer with a rare condition that makes her smell like rotten fish says she used to shower four times a day in a bid to mask her odour before realising warm water made it WORSE
- Kelly Fidoe-White, 41, from Manchester, has lived with condition all her life
- Trimethylaminuria is condition so rare it has only been recorded 100 times
- Kelly was formally diagnosed in 2015 after years of symptoms
- Condition has led to years of bullying and name calling over her scent
A woman with an extremely rare condition causing her to constantly smell like fish said she used to take four showers a day to mask the smell.
Kelly Fidoe-White, 41, from Oldham, Manchester, has lived with Trimethylaminuria (TMAU) her whole life, a disorder more commonly know as ‘fish-odour syndrome.’
It is a condition so rare that it has only been recorded 100 times in medical records but some medical professionals believe the real figure could be much higher, with some sources putting the figure closer to 200.
TMAU sufferers produce a range of strong body odours including rotten fish, onion and faeces.
Kelly, a senior radiographer, was formally diagnosed with the condition in 2015- when she was 34.
Kelly Fidoe-White, 41, from Oldham, Manchester, has lived with Trimethylaminuria (TMAU) her whole life- a disorder more commonly know as ‘fish-odour syndrome’
Kelly, a senior radiographer, pictured with husband Michael, was diagnosed with the condition in 2015- when she was 34
She told NeedToKnow: ‘People call it a curse, and I can see why. 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.’
The 41-year-old has had decades of name-calling and the condition has seen Kelly change her uniform twice a day, using whole cans of deodorant to cover the scent.
Her mother once had to visit her work with a fresh set of clothes because someone complained to management about her smell.
Fear of other people noticing her smell has left her housebound and she now works night shifts, also suffering bouts of depression.
The 41-year-old has had decades of name-calling and the condition has seen Kelly change her uniform twice a day, using whole cans of deodorant to cover the scent
The 41-year-old had first experienced symptoms when she was six years old, noticing that her urine would smell like fish.
Years later, when she reached puberty, she developed a prominent body odour which extended beyond her toilet visits.
To combat the smell, she showered several times a day, not knowing that this actually made the scent worse.
Kelly added: ‘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.’
The 41-year-old had first experienced symptoms when she was six years old and noticed that her urine would smell like fish
Kelly said: ‘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.’
When Kelly reached puberty she developed a prominent body odour that extended beyond her toilet visits. She showered several times a day, not knowing that this actually made her scent worse
Kelly has sought out ways of improving the symptoms over the years, including adopting a reduced choline diet.
She avoids foods such as liver, kidney beans, peanuts and cruciferous vegetables as they are all really good sources of the nutrient.
But her reduced choline diet puts her at a higher 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 etc., 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.’
Kelly has sought out ways of improving the symptoms over the years, and adopted a reduced choline diet, avoiding foods such as liver, kidney beans, peanuts and cruciferous vegetables as they are all really good sources of the nutrient
Sadly, there is no cure for Kelly’s condition but avoiding certain foods and supplementing nutrient levels can lessen the symptoms, which fluctuate over time.
After experiencing decades of bullying, she underwent therapy and counselling, and claims that trolls body shamed her by saying the scent was caused by 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.’
The 41-year-old has also undergone therapy and counselling after she suffered years of jibes and bullying related to her condition
Kelly said: ‘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.’
Kelly said that she spoke out about her condition because she wanted to give a voice to her fellow sufferers
What is Trimethylaminuria (‘fish odour syndrome’)?
Trimethylaminuria (TMAU) is an uncommon condition that causes an unpleasant, fishy smell. It’s also called “fish odour syndrome”.
Symptoms of trimethylaminuria
Trimethylaminuria symptoms can be present from birth, but they may not start until later in life, often around puberty.
The only symptom is an unpleasant smell, typically of rotting fish – although it can be described as smelling like other things – that can affect the:
- vaginal fluids
The smell may be constant or may come and go. Things that can make it worse include:
- certain foods – such as fish, eggs and beans
When to see a GP
See a GP if you notice a strong, unpleasant smell that doesn’t go away.
They can check for more common causes, such as body odour, gum disease, a urinary tract infection or bacterial vaginosis.
Tell your GP if you think it might be trimethylaminuria. It’s an uncommon condition and they may not have heard of it.
They may refer you to a specialist for tests to check for the condition.
Causes of trimethylaminuria
In trimethylaminuria, the body is unable to turn a strong-smelling chemical called trimethylamine – produced in the gut when bacteria break down certain foods – into a different chemical that doesn’t smell.
This means trimethylamine builds up in the body and gets into bodily fluids like sweat.
In some cases, this is caused by a faulty gene a person has inherited from their parents.
Treatments for trimethylaminuria
There’s currently no cure for trimethylaminuria, but some things might help with the smell.
Foods to avoid
It can help to avoid certain foods that make the smell worse, such as:
- cows’ milk
- seafood and shellfish – freshwater fish is fine
- liver and kidney
- supplements containing lecithin
It’s not a good idea to make any big changes to your diet on your own, particularly if you’re pregnant or planning a pregnancy, or are breastfeeding.
Your specialist can refer you to a dietitian for advice. They’ll help you make sure your diet still contains all the nutrients you need.
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