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'I DON'T HAVE ANY QUALITY OF LIFE - I HAVE TO WAKE UP AND HAVE THIS SMELL EVERY DAY', SAID CARMEN DAVIES WHO HAS AN ULTRA-RARE CONDITION 17:49, 30 May 2025 A mother has
bravely shared her experience with a rare condition that causes her to smell like decaying fish. Carmen Davies, 29, was diagnosed with trimethylaminuria (TMAU), also known as fish odour
syndrome, in June, 2023. The genetic disorder affects her breath, sweat, and urine, releasing a potent smell particularly after consuming certain foods like fish and eggs. Despite her
inability to smell it herself, the Manchester mum is painfully conscious of the reactions from people around her when she's out in public. Carmen takes daily showers, brushes her teeth,
and uses perfume in an attempt to conceal the odour, but often opts to stay indoors to spare others from the smell. The condition has severely impacted her life, hindering her job prospects
and even causing her to miss her cousin's funeral in 2023. Carmen said she tried not to take negative comments about the odour personally but said it remained a daily battle, reports
the Manchester Evening News. She said: "I live my life having to stay away from people, and that's led to massive mental health issues. Smelling like rotten fish, rotten eggs,
urine and faeces is horrendous - it doesn't matter how much I wash. "I go out wanting to be cautious about other people and feeling guilty about myself standing next to someone. I
have a beautiful baby boy though and any issues from my condition have to be overcome." She added: "He needs to be outside - so with having a child, I've had no other option
but to try and take myself out of my comfort zone at times. "It's a natural human reaction to go 'oh, what is that smell?' so I try not to take it personally, but it is
really hard. My aim is to try and explain it to other people. It really has altered my way of life in every single way." The condition is caused by a mutation in the FM03 gene, which
helps break down trimethylamine. Without this function, the compound accumulates, leading to a fish-like odour. Carmen first noticed she had an unusual smell when she was at college - with
suggestions that the disorder might worsen during puberty. _Stay informed on the latest health news by signing up to __our newsletter here_. She recalled: "It all started when I was
about 18. There was this one boy that told everybody that I smelled like poo - I thought it was strange, and just being malicious to me. "So I didn't take any notice of it, but
then I started hearing indirect comments about me from other people - that I needed to have a bath and have a wash. This guy then started to make songs about me on his YouTube channel -
he'd nickname me 'poo-dle'. ". Carmen eventually sought medical advice, though she claimed she was initially dismissed as having a mental health-related issue. Metabolic
Support UK reports that only around 100 people in the UK are known to have the condition, suggesting it could be under-diagnosed and misdiagnosed. Carmen explained: "They believed I had
a condition where I could smell smells that weren't there - but I shower every morning and keep clean so I went back to the doctors and said I was sure something was wrong. I asked to
be referred to a TMAU specialist centre - I was told it was really rare and that it was all in my head. "I wouldn't leave it and kept going back to doctors as I couldn't do
anything without people commenting about how I smelt. I eventually had an official diagnosis from my doctor in 2023. "You can only manage your symptoms by food - I have to avoid red
meat, anything processed or frozen, green vegetables - you'll always have an odour. "Over the years I've found that fasting makes you smell worse in the first seven days but
if you continue your fast then your TMAU tends to smell like cinnamon. It was working in the sense that I didn't smell like faeces and sewage, but I became too thin from not eating
enough." Carmen faces daily challenges due to her condition and generally steers clear of family and social events. She added: "I don't have any quality of life - I have to
wake up and have this smell every day. "I did ballet, singing, and dancing when I was younger, and I'd do anything to be able to do that again. Family gatherings are no-go areas. I
lost my cousin, and I couldn't attend his funeral because of it - I really do sit in my house all the time. "I did meet someone on a TMAU forum online, and we completely
understood each other - it's so hard to explain to other people, and I wish the world could be kinder about things." Article continues below