Fish Odour Syndrome: Woman Suffers From Rare Condition That Makes Her Smell Like Rotting Fish

'I Smell Like Rotting Fish': Woman Has Rare Fish Odour Syndrome

A brave singer has told of her daily battle to stop herself smelling of rotting fish.

The stench is so strong that she makes any room that she occupies stink – and has forced her to avoid eating fishy foods.

Cassie Graves, 22, suffers from Trimethylaminuria (TMAU), also known as fish odour syndrome. It is a rare metabolic disorder where the body can’t break down trimethylamine which is found in certain foods.

It causes the chemical to build up in her system before it is released in her sweat, urine and breath – giving off a strong fishy pong.

Pretty Cassie, from South London, said: “You know when you go to the food market and there’s rotting fish? That’s what I smell like.

“The whiff comes out from my skin and hair. I sweat it out and it doesn’t matter how many showers I take, I just can’t get rid of it.

“There were times when I smelt so badly of fish that my mum wouldn’t let me go to school because she didn’t want me to be bullied by the other kids.

“And it’s hardly ideal to have to go on stage and give a performance when you stink of fish!”

Cassie is unable to smell her own odour and has to rely on friends and family to tell her when she reeks.

“The fact that I can’t sniff it out myself is the most frustrating thing about the disorder. It makes you paranoid.”

Cassie’s foul smell has been following her since she was three years old. It was her sister who first commented on her unpleasant scent.

“I used to share my bedroom with my sister and she started complaining about how much I stank of fish.

“My mum presumed she was just being the standard grumpy older sibling and ignored her. However gradually, the smell became so strong that no-one could deny it.”

Cassie saw several doctors but none could explain the reason for her horrid waft. It was only after Cassie’s mum listened to a radio show about someone with fish odour syndrome, that she was finally diagnosed with the disorder.

She began to identify the foods that were directly causing her smell. And as a result, Cassie was forced to cut out fish, meat and dark green leafy vegetables from her diet.

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“Eliminating those foods was devastating. As a child, fish fingers were my favourite food.

“Over the years, I’ve tried to re-introduce small amounts of fish into my diet again to see if I had grown out of it. But each time, I wake up the next morning and my whole bedroom reeks of fish.”

The talented singer-songwriter says that living with Trimethylaminuria has been a daily struggle.

“Even now, it’s hard explaining to others that I have fish odour syndrome. It’s so rare that people don’t believe you when you say you have it.

“At gigs, I feel like a right diva asking that they don’t serve certain food. Reputation is everything in the music business and I don’t want people regarding me as ungrateful. I know I’m not Mariah Carey!”

One person who is supportive of Cassie’s disorder is her boyfriend, Dom Oliver, student, 21.

She said: “I’m so fortunate that Dom is cool about the smell and doesn’t find me gross.

“He helps me with my restricted diet. We also have a pact that if I stink of fish in the morning, he’ll tell me immediately and try not to laugh!

“I’m lucky I’ve found a boy who has a sense of humour about it. Dom’s family have accepted me with it too - in fact, his dad often make jokes about me smelling!”

However, Cassie admits that her condition has led to some embarrassing moments during their relationship.

“For Valentine’s Day, Dom treated me to a lovely meal at a posh restaurant. I was swept away by the whole occasion and stupidly, I thought I’d treat myself and try some seafood.

“Later during that evening, I absolutely stank of fish – not romantic at all!”

Cassie, who is currently working on her first solo album ‘Unpunished’, wants to educate more people about the disorder.

“I’ve got to a point where I don’t want to hide it anymore. It’s a tricky thing to admit that ‘Yeah, I stink’ but at the end of the day, there are worse things in life than smelling of fish.

“Fellow sufferers need to be more open and talk about their experiences.”

Dr Robin Lachmann, a consultant in Metabolic Medicine at University College Hospital in London, said: "Trimethylaminuria is still very much under-recognised and a lot of doctors aren’t aware of the condition.

“As a result, it takes a long time for patients to be referred to a specialist and diagnosed.

“Treatment is a diet low in trimethylamine which is found in fish and choline which is found in foods like red meat and eggs.”

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