An Oldham woman with trimethylaminuria (TMAU), which is sometimes called ‘fish odour syndrome,’ has spoken out about her experience – and her wish to educate others about the disease.

Kelly Fidoe-White, a hospital worker from Royton, has experienced the condition for years.

She says ‘fish odour syndrome’ is a misnomer, as her condition smells more like body odour, but for some, the condition can smell like burning tyres, garbage, or even faeces.

Her parents first noticed the smell when she was aged around six years old, but she didn’t get a diagnosis until years later – when she was aged 34.

As the severity of the condition can fluctuate, Kelly said getting a diagnosis can be difficult.

After experiencing some bullying at school, Kelly, who does not have a sense of smell herself, said co-workers began complaining of the smell to managers as they felt too awkward to talk to her herself.

Kelly, aged 42, said: “I was getting up in the morning, having my shower using the freshest smelling shampoo and body wash I could lay my hands on, I was making sure I was spraying myself with perfume.

“I was scrubbing the armpits of all my uniforms religiously before I put them in the wash.

“I was literally doing everything and walking through the door at work almost immediately having people complain that there was a smell.

“I thought I was losing it – I’m either imagining that I’m having a shower or I’m doing something so fundamentally wrong in my cleaning regime that this is happening.

“I was really starting to consider whether I should even be in work because I just did not know what else to do.”

After thinking she was going crazy, Kelly did research of her own and presented her findings to her GP – who was supportive, but unsure due to the rarity of the condition, which some clinicians believe may be underdiagnosed.

After deciding she wanted children, Kelly’s sister suggested she see a genetics counsellor, to see if any of her other health problems could be passed on.

Kelly said: “I saw that as another way into getting tested, and my GP was quite happy to refer me.

“The genetics department at the Manchester Royal Infirmary was very thorough, we talked about all sorts of things and at the end, I mentioned my body odour problem.

“They were a little more clued into it, and so they did the test.”

Weeks later, Kelly got her results in the post.

Kelly said: “The moment I read the letter, it was like YES – we know what it is. It’s an answer.

“If I’d have had enough room in the lounge, I’d have been doing laps.”

While TMAU isn’t curable, Kelly says, after a few years, she is now 95 to 99 per cent smell-free.

Her co-workers were supportive following the diagnosis, and now Kelly wants to raise awareness of the condition – and show there’s hope for those who live with the condition.

Kelly said: “I’ve already put my face out there about this condition, so I’m happy to continue to do that and continue to educate people.

“I’m in discussions with one of the local GPs about maybe setting up talks with local GPs about it.

“That’s my aim – getting people support from the places they need it.”

Kelly recommended Facebook group MEBO PATM/TMAU, rare disease social network RareConnect, and The MEBO Blog for those with the disease.