I suffer from a rare condition that makes me smell like fish

A UK woman suffers from a rare condition in which she constantly smells like fish, despite showering multiple times per day.

“People call it a curse, and I can see why,” Kelly Fidoe-White, 41, told NeedToKnow.online while describing her situation. “To sum it up in two words, it’s confusing and isolating.”

She explained, “The worst part is feeling like you’re going crazy from it. If you let it, the condition can begin to take over your thoughts.”

The Oldham, Manchester, native specifically suffers from Trimethylaminuria, also known as TMAU, which is a rare metabolic condition colloquially known as “fish-odor syndrome” due to the smell, Jam Press reported. However, other patients have reported producing a smorgasbord of body odors ranging from onions to feces.

TMAU occurs when 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,” NHS.UK reports.

As a result, trimethylamine accumulates in the body and contaminates body fluids like sweat and urine, thereby causing the aforementioned stench.

A super-rare ailment, there have only been 100 recorded cases of TMAU — although medical professionals place the actual figure closer to twice that much. Unfortunately, getting diagnosed is difficult “as the smell is often intermittent, and [general practioners] tend to not refer based on the individual’s testimony alone,” lamented Fidoe-White.

The X-ray technician first realized something was awry when she was 6 years old, after noticing that her urine smelled like fish, Jam Press reported. This smelly situation snowballed when she hit puberty, whereupon Fidoe-White developed a pungent body odor. However, it wasn’t until she was diagnosed with TMAU in 2015 that she knew she had a problem.

Needless to say, the malodorous malady made Fidoe-White the object of ridicule, with the poor girl reportedly enduring decades of name-calling as a result.

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

She added, “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?’ “

Fidoe-White recounted one humiliating incident where her mom was forced to visit her workplace with fresh clothes after someone raised a stink to management about her scent.

“As a health-care professional, to be asked if you know you should be using soap when you wash, is really upsetting,” added the woman, who had to undergo years of therapy to cope with the bullying.

Indeed, due to the constant torment, the besieged gal developed severe depression and sequestered herself inside her house to avoid being ridiculed. She even switched to working night shifts, so her smell wouldn’t be an issue.

Fidoe-White also took pains to mask her stench, including changing her uniform twice a day, using whole cans of deodorant and showering up to four times a day.

However, these odor-mitigating measures were largely ineffective because, as the patient pointed out, TMAU “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,” she lamented, claiming that sufferers often “smell worse after a shower because the pores open more due to the warm water.”

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

And a lack of showering apparently isn’t the only myth regarding TMAU. Fidoe-White said trolls would falsely claim her condition was caused by her weight — an accusation she deemed particularly ludicrous as “my smell was worst when I was at my lightest.”

Thankfully, the courageous patient said she has managed to curb her stinky symptoms by avoiding chlorine-rich foods such as liver, kidney, beans, peanuts and cruciferous vegetables. She also says she’s taking “supplements scientifically selected to reduce TMA production and boost TMA oxidization.”

“Currently, I believe I am relatively symptom-free,” said a relieved Fidoe-White, who added that finding a community online helped her cope psychologically.

The brave woman is currently using her experience to spread awareness about TMAU.

“I want to give a voice to my fellow sufferers, who suffer in silence because of the stigma attached to BO,” Fidoe-White said. “It’s difficult, because once you are labeled as someone with a BO problem, some people do use it as a stick to beat you with if they don’t like you.”

She added, “People are generally scared to speak up for fear of being ridiculed.”