Ellie James who works as a company director in the UK, is one of only a few of people in the world to suffer from the very embarrassing condition called Trimethylaminuria (TMAU). The condition is a metabolic disorder in which the body loses the ability to properly break down the trimethylamine found in certain foods. Trimethylamine then builds up and is released in the sufferer’s sweat, urine, and breath, giving off a strong fishy odor.
Women are more likely to develop the condition than men, possibly because female sex hormones aggravate the symptoms. It can result in depression and other psychological problems. It is so rare that only a handful of people have been diagnosed in the UK.
Last Christmas, Ellie James opened her Secret Santa present and she immediately burst into tears. It was yet another bar of soap. She had received so many over the years – along with copious bottles of perfume and body spray.
Just as with all the other “gifts”, she knew it hadn’t been chosen as a thoughtful gesture but as a hint – that she was smelly. When she opened her present, her colleagues roared with laughter and Ellie fled the office in embarrassment.
Sadly she has had to endure similar humiliations for 14 years because she suffers from a bizarre medical disorder which makes her smell of fish. It can also make her reek of rotten eggs.
Today Ellie, 44, bravely reveals how she is just one of a handful of Brits to be diagnosed with Trimethylaminuria (TMAU). Also known as fish-odor syndrome, it has had a devastating impact on her life. Bullies have dubbed her Smelly Ellie and have even posted body spray through her letterbox. She was first struck down with the condition at the age of 30.
Her body is unable to cope with certain foods – meat, dairy, coffee and fish – and releases trimethylamine, which creates a putrid odor. But even when she avoids those foods there are days she is unable to stop the smell. It leads to her being abused in the street and on public transport. At her lowest point she was taking a bath five times a day.
Company director Ellie, from Abingdon, Oxfordshire, explained how she became aware of her condition: “At first I didn’t understand what was wrong. I’d always had impeccable hygiene.
“The smell was a complete mystery. I wondered if my cat had brought in a mouse and left it to rot. “But I slowly realised it was me when strangers began to stare at me while holding their noses. I heard people whispering about me in the office.
“I would come home from work every night and cry. Soon people were showering me with gifts of perfume. At Christmas I’d get soap – it was completely humiliating. “Once a driver actually installed an air freshener on the bus I use and a passenger said it was my fault. It was soul-destroying. “It was a real struggle getting out of bed in the morning.”
Alarmingly, Ellie got so desperate she started to scrub her skin with kitchen detergent until it was red raw. “I was at my wit’s end,” she said.
It took doctors seven years to diagnose the condition after she first plucked up courage to visit her GP in 2005. “The doctor started to lecture me on personal hygiene and told me how to wash,” she said. She was so mortified she waited a whole year before seeing another doctor.
But together they researched the possible causes and in 2007 she came across an online forum for people with TMAU. “Although it was hard to swallow I felt relief as I’d finally found the answers I’d been looking for,” she said. She was referred to an endocrinologist – an expert on hormones – who put her on antibiotics and suggested a diet plan.
She said: “I began to wash with a special pH-balanced soap after I found out washing excessively with normal soap made the smell even worse. “There is no cure but making these changes helps.”
Brave Ellie added: “Now when someone holds their nose I take them aside and explain I have a medical condition. I hope my story will help educate those who point fingers and encourage other sufferers to find the strength to get help.”
Now she is beginning to get her confidence back and has even found love with boyfriend Dan Molston, 50. They first met in 2006 through mutual friends and bonded over an interest in cycling. Romance developed earlier this year.Dan said: “Ellie is a lovely person and that’s all that matters.”