**Mum with Rare Disorder Opens Up About Life Afflicted by Distressing Uncontrollable Odour**
A young mother from Manchester has courageously spoken out about living with an extremely rare metabolic disorder which leaves her with an overpowering and unpleasant body odour — described as similar to rotting fish, eggs, and even sewage. Twenty-nine-year-old Carmen Davies was diagnosed last year with Trimethylaminuria (TMAU), a little-known genetic condition often referred to as “fish odour syndrome”.
Despite her best efforts to remain clean and presentable, Carmen’s condition causes an inescapable scent to emanate from her breath, sweat and urine, which can intensify when she eats foods such as eggs and fish. Tragically, she cannot detect the odour herself, but she is painfully aware of the discomfort and reactions of those around her, particularly when in public places.
The impact of TMAU on her life has been monumental, affecting her opportunities to find work, her social life, and even causing her to miss important life events — including her own cousin’s funeral in 2023. The stigma and misunderstanding surrounding her condition mean she now rarely leaves the house, taking every precaution on the rare occasions she does step outside, in an attempt to shield others from the smell.
Speaking candidly, Carmen described how the disorder has led to significant mental health struggles. She said, “People can be cruel without realising it. No matter how much I wash, I can’t escape it. I don’t want to make anyone uncomfortable, so I often keep myself indoors. It’s a miserable way to live.”
Her daily routine is filled with repeated showers, careful dental hygiene, and liberal use of perfume—all in the hope of masking the odour. Despite these efforts, she often feels forced to avoid outings and social gatherings. She admits that her son has been a major inspiration in her fight for some normality, explaining, “Children need fresh air and experiences, so I’ve had to face my fears and go out at times. Still, every outing is stressful. I’m constantly worried about what people are thinking.”
Carmen first noticed that something was amiss when she was a teenager. Initially, she brushed off the hurtful remarks from peers as typical adolescent teasing. Over time, indirect and persistent comments from classmates suggested a problem, and one individual even resorted to making unpleasant songs about her on social media.
Initially, Carmen’s concerns were dismissed by medical professionals as being psychological in nature. “I was told it was all in my head, and that I was just imagining it,” she recounted. Frustrated but determined, she persisted and eventually received an official diagnosis in 2023, years after first experiencing symptoms. According to Metabolic Support UK, TMAU is exceptionally uncommon, with only around 100 confirmed cases in the United Kingdom, though it is suspected to be widely underdiagnosed.
TMAU is caused by a mutation on the FM03 gene, which prevents the body from properly breaking down trimethylamine — a compound responsible for the potent smell. There is no cure, and managing the condition largely centres on carefully restricting certain foods. Carmen follows a strict diet, avoiding red meats, processed foods and green vegetables, which only offers minor relief. Experimenting with fasting offered a change in the odour’s quality, but brought negative side effects, such as dangerous weight loss.
Due to the severe social ramifications, Carmen has distanced herself from most family events and social occasions. She has said, “I don’t really have a quality of life anymore. I miss doing things I loved—like ballet and singing—things that now feel completely out of reach.” Missing her cousin’s funeral was especially hard, illustrating the isolating impact of the condition.
Carmen has found some solace in online communities, where others with TMAU can share their experiences and support one another. “It’s such a relief to speak to others who truly understand. Most people can’t imagine living like this. All I wish is for more kindness and understanding in the world, and for more awareness of invisible conditions like mine,” she shared.
While TMAU remains a rarely discussed and deeply misunderstood medical condition, voices like Carmen’s continue to raise vital awareness and foster compassion for those facing its hidden hardships every day.