woman suffers from fish and rotten egg syndrome

When Ellie James opened her Secret Santa
present, she 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-odour 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 odour.
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.”
Chef Glynn Purnell who has made a BBC TV
documentary on fish caught out at sea and
their journey to the dinner table
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.
Loyal Dan said: “Ellie is a lovely person and
that’s all that matters.”
What is 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 odour.
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.