Interview: The medical condition that leaves Gary feeling isolated

GARY Laker used to be the life and soul of the party and then, 15 years ago that all changed.

"I was getting a lift to work as normal with a friend of mine and I noticed two massive air fresheners very obviously placed. I asked if he was trying to tell me something. And he said not him but his wife. He said that she complained their car smelled of rotting fish every time I'd been in it."

As a man who was always very particular about his personal hygiene Gary was mortified. His wife Elaine said she couldn't smell anything but then he started to notice people staring at him so went to the doctor.

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"I told the doctor that people were avoiding me because I smelt so bad, but he couldn't find anything wrong with me and put me down as a hypochondriac," explains Gary, 55, from Harrogate.

Gary was so worried about the way he smelt that he avoided going out as much as possible.

"We were always out," he says. "Going away for weekends and out at the pub. Now I avoid going anywhere in public. It really affected my confidence and self-esteem."

It was only when the Lakers moved to Hampsthwaite and got a new doctor last year that he was taken seriously for the first time.

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"The doctor was far more approachable and said he was more than willing to believe that I could have a problem."

Gary researched his symptoms on the internet and discovered a condition called Trimethylaminuria and asked his doctor to be tested for it. His doctor agreed and in September last year he tested positive for the metabolic condition.

Trimethylaminuria (TMAU), also known as fish odour syndrome, is a rare metabolic disorder where the body loses the ability to properly breakdown trimethylamine (TMA) found in certain foods into timethylamine oxide (TMAO).

Trimethylamine then builds up and is released in the person's sweat, urine and breath, giving off a strong fishy odour. The intensity of this odour may vary over time.

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In many cases, the strong body odour interferes with an affected

person's relationships, social life, and career. People with trimethylaminuria may experience depression and social isolation as a result of this condition.

The only test available is carried out in the laboratories at Sheffield Children's Hospital which normally looks into metabolic disorders in children.

Nigel Manning, principal clinical scientist at Sheffield Children's Hospital, said the number of people being put forward for testing had doubled in recent times, although many GPs were still ignorant about

the condition.

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"When we started testing in 1997, we were only testing a handful of (urine) samples. Then it rose to around 100 a year. Last year, after a couple of television programmes about the condition, the number rose to 250. Already this year we have had that number."

The TMAU is diagnosed using a specialist piece of equipment which tests the vapour given off by the patient's urine sample.

Ideally, Mr Manning says, patients would be advised to get a DNA test to confirm why the test proved positive. But he said at more than 200 a test many PCTs were unwilling to fund it.

Mr Manning says some estimate that there could be up to three per cent of the population with some form of the condition.

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"Doctors are becoming increasingly aware of the condition but it does

indicate that there are a lot of people going undiagnosed which could have psychological implications."

An added problem is that a large proportion of the population cannot smell it, which makes the sufferer feel even more isolated.

When Gary Laker received his positive diagnosis, it was a relief to him, but Elaine was furious that she had believed the doctors rather than her husband for all those years.

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"I felt so guilty," she said. "The doctor told me that it was all in his head and so I believed him rather than Gary. After 15 years to be told that Gary had been right all along made me feel that I had betrayed him in someway,"

Although there is no cure as such for TMAU, Gary can reduce the

symptoms by adhering to a very strict diet, avoiding any food with timethylamine in it including most dairy, fish, pulses, some vegetables, potatoes and meat.

"We seem to live on rice," said Elaine who is supporting Gary by following the same restrictive diet as him. "I love cooking," says Gary, "but when you have to avoid all the things you love it is quite hard."

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Gary also takes antibiotics for two weeks to kill off the bacteria in his stomach and then for six weeks takes probiotics to replace the good bacteria and then the regime starts over.

"For about two to four weeks it does reduce the number of episodes, but the main problem is that I can never predict when they are going to happen. At least for a few weeks I don't get the staring."

Gary also takes charcoal tablets, body mints, mushrooms tablets as well as external deodorants and constant washing. "It is costing me a fortune," says Gary, who still finds it hard to go out, other than to work on building sites.

"Even simple things I miss," says Elaine, "like going to the

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supermarket. We always went shopping together but now Gary won't risk going to the shops in case people stare at him. We now do most of our shopping online so that we can do it together."

Gary hopes by speaking out more people will become aware of the condition and doctors will be less quick to write people off as being hypochondriacs.

"I want people to realise that I don't smell because I am dirty, I have a medical condition. I am sure there are so many more people out there who are not diagnosed and are suffering in silence."

n For more information, visit www.tmau.com which offers support and information to sufferers.

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