- Ellie James contracted trimethylaminuria, ‘fish-odour syndrome’, aged 30
- Condition caused by missing enzyme, gives sweat and breath strong smell
- Bathed up to 5 times a day, used kitchen detergent in wild bid to clean
- Given soap in office secret Santa, body spray secretly posted through door
- Referred to hormone specialist after forcing GP to take syndrome seriously
17:30 EST, 6 April 2014
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13:37 EST, 7 April 2014
Taunts and ridicule: Ellie James, 44, was 30 when her sweat, breath and urine started to smell of fish
For 14 years, Ellie James has been blighted by an incredibly rare and embarrassing genetic disorder.
The company director, 44, is one of only a handful of people with a condition that leaves her smelling of fish or rotten eggs.
But it took seven years to finally diagnose her after doctors dismissed her concerns – and even gave her humiliating lectures on personal hygiene and how to wash properly.
The disorder, known as trimethylaminuria, or fish-odour syndrome, has had a devastating impact on her life since it developed when she was 30.
Dubbed ‘smelly Ellie’ by bullies, she has been taunted and ridiculed by strangers. She is the butt of office jokes – receiving soap or perfume as secret Santa presents – and has even had bottles of body spray posted anonymously through her letter box.
Miss James, from Abingdon, Oxfordshire, said: ‘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.’
At one point Miss James was having a bath five times a day. And in desperation she resorted to scrubbing her skin with kitchen detergent until it was red raw.
Teased: Her workmates would give Ellie soap and perfume as presents in the office secret Santa as a joke
‘I was at my wits’ end,’ she told the Sunday Mirror.
The condition is caused by an enzyme missing which causes a strong odour in sweat, urine and breath – usually described as like rotting fish, faeces or rubbish.
It is created when the body is unable to break down the smelly chemical trimethylamine that is produced in the gut when certain foods, such as dairy, coffee, meat and fish, are digested, and there is currently no cure.
After suffering with the condition for five years, Miss James plucked up the courage to visit her GP in 2005, but she was left feeling humiliated after being lectured on personal hygiene.
As a result, she did not return to see her doctor until a year later, when she was finally taken seriously.
Treatment: Finally, after persuading her GP to reassess her condition, she was referred to a hormone specialist who put her on an intense programme of antibiotics and a unique diet, which has calmed her symptoms
Tests were carried out and she was eventually diagnosed in 2007. She said: ‘Although it was hard to swallow, I felt relief.’
Miss James was referred to an endocrinologist – an expert on hormones – who put her on antibiotics and a diet plan. She said: ‘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 added: ‘Now, when someone holds their nose, I take them aside and explain that 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.’
Miss James’s partner, Dan Molston, 50, said: ‘Ellie is a lovely person and that’s all that matters.’
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The comments below have been moderated in advance.
blondie,
Kamloops, Canada,
5 hours ago
Well done Ellie, it is a shame you had suffer the comments from ignorant people, but it is easy to see that you are a kind, lovely woman. I hope you have a better time of it now and can ignore the idiots. Hopefully, one day, there will be a cure for this. Good luck.
Starfish,
uk,
6 hours ago
That’s just awful for her, I have almost the opposite problem. No sweat or if I sweat there is no smell, it’s just like water. Mine is thyroid related, she should have her thyroid antibodies tested, ask the Endo for this, unlikely her drs will do it.
anne,
sheffield, United Kingdom,
6 hours ago
Her partner Dan says ‘Ellie is a lovely person and that’s all that matters……what a lovely man.
Poppy Donnegan,
Sydney, Australia,
6 hours ago
The article forgot to mention that she is makeup free in that top photo.
Anonymous female,
Midlands, United Kingdom,
6 hours ago
Saw another lady with this condition on Embarrassing Bodies, glad she is able to treat the symptoms, and wish her all the best in the future.
Char P,
Somerset, United Kingdom,
7 hours ago
Poor woman, that must be so hard to deal with. She’s very brave for pushing for a diagnosis and holding her head up high!
bluesman,
Redditch,
7 hours ago
Why oh why do we still continue to refer to genetic disorders as syndromes?
It’s a condition and I hope that there can be some method of resolution for her.
I have found that quite a few cat owners have issues similar to this, where they start to smell like the litter tray, so perhaps there are connections with the animal kingdom.
mikex,
london, United Kingdom,
7 hours ago
I can quite understand how important it would be for her to come out and talk about this and raise awareness of the problem as the majority of people are unaware that this is a medical condition and think that it is in some way linked to poor hygiene. Good luck to her and I do hope that by raising awareness of this it helps in some way to find a more effective way of dealing with the problem.
craftyhooker55,
leicester, United Kingdom,
7 hours ago
I have every sympathy. There is nothing worse than facing the massed wrath of the ignorant general population. How unkind and unfeeling some people can be.
The_Mutts_Nuts,
Dix Close, United Kingdom,
8 hours ago
In this world, full of modern technology and scientific and medical breakthroughs, there are still many medical conditions that remain unknown or rare that are simply dismissed. Unfortunately, for sufferers this can range from being embarrassing to being made a social outcast for something beyond their control. Just as many disabled people in wheelchairs, using sticks or frames are given a wide berth by many, even in these days of ‘equality and understanding,’ there seems to be little empathy from many people including medical professionals. Hopefully, greater research will be done into these conditions to give sufferers a better quality of life.
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