For 14 years, company director Ellie James has been receiving the same Secret Santa presents at Christmas – bottles of perfume and bars of soap. And when she opens them, she is met with roaring laughter from her colleagues. The presents are mortifying, they break her heart every time because they are a subtle reminder of the horrible genetic disorder that she has to live with. Ellie suffers from a rare condition that leaves her reeking of fish and rotten eggs.
Ellie’s condition might seem amusing or even downright funny, but it’s quite sad when you look at it from her point of view. You might think that she isn’t very good at personal hygiene, but you would be wrong. At one point, she even showered five times a day and scrubbed her skin with dishwashing detergent until it became red and raw. But nothing worked; no matter how much Ellie cleaned herself, the smell kept coming back stronger.
It all began when Ellie turned 30. “At first I didn’t understand what was wrong,” said the 44-year-old from Abingdon, Oxfordshire. “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 realized it was me when strangers began to stare at me while holding their noses. I heard people whispering about me in the office.”
As devastating as the smell was, it wasn’t until much later that Ellie was diagnosed with the rare disorder – trimethylaminuria, or fish-odor syndrome. But the years before Ellie could understand what was happening to her were a true nightmare. “I would come home from work every night and cry,” she said. “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.”
In 2005, five years after the horrible odor had gripped her life, Ellie mustered up the courage to see her doctor. Unfortunately, the visit went horribly wrong – she ended up being lectured on personal hygiene by the ignorant doctor. But she returned again a year later, and she was finally taken seriously. After a series of tests and a visit to an endocrinologist, Ellie’s condition was identified in 2007. “Although it was hard to swallow, I felt relief,” she said.
Fish-odor syndrome is caused by a missing enzyme, resulting in strong-smelling sweat, urine and breath. The smell is usually similar to rotting fish, feces or garbage. Because of the enzyme’s absence, the body is unable to break down trimethylamine – the smelly chemical that is produced in the gut when foods like dairy, coffee, fish and meat are digested. Women are more likely to develop the disorder than men; female hormones are known to aggravate the condition. Currently, the extremely rare condition has no cure.
Ellie is now taking antibiotics and following a special diet plan. “I began to wash with a pH-balanced soap after I found out that washing excessively with normal soap made the smell even worse. There is no cure but making these changes helps,” she said. “Now, when someone hold their nose, I take them aside and explain that I have a medical condition. I hope my story will educate those who point fingers, and encourage other sufferers to find the strength to get help.”
Despite her odd condition, Ellie has found love, which is wonderful. She met 50-year-old Dan Molston, in 2006 through mutual friends and bonded over their common interest, cycling. Dan said: “Ellie is a lovely person and that’s all that matters.”
Source: Mirror.co.uk
