Disorder causes smell that can't be escaped

Disorder causes smell that can't be escaped »Play Video
Tammy Gobin
Imagine waking up every day and smelling like rotten garbage, sweaty gym socks or dead fish.

Some people have been dealing with that reality since birth and, until recently, had no idea why.

If the smell isn't bad enough, no soap can wash it away and no amount of deodorant is strong enough to stop the odor. For hundreds of patients, unraveling this medical mystery has been a lifelong struggle.

For daycare teacher Tammy Gobin it took nearly two years before she convinced the medical community she had a metabolic disorder that gives off a pungent odor.

Gobin is a daycare dynamo.

"I can't do it," insisted a young student trying to write his name. "Yes you can, you can do anything," said Gobin. And he did. Parent Katie Wade told me it's that kind of teaching that attracted her to Gobin. Her 3-year-old son Jackson is thriving in her daycare.

"I fell in love with Miss Tammy," said Wade while picking up Jackson from the daycare. "See you later gator," said a struggling Gobin as she barely lifts Jackson after he did a running-leap into her arms for his good-bye hug.

Where else can you get a daycare provider with a master's degree who is also hard at work on her Ph.D.? Gobin could get almost any teaching job, but won't.

"I've really done a good job thinking how to isolate myself as much as possible," said Gobin, who runs the daycare out of her Fort Lewis home.

Her self-imposed isolation is a result of the way she smells and the ridicule it brings. She shared some of the hurtful comments that at one time were near daily occurrences.

"'Oh my God take a bath, or 'what that's smell?' or they rub their noses and they look at me," Gobin said.

When I was with Gobin, she immediately noticed I developed a sudden and persistent cough. I wasn't sure if it was related, but she was. I couldn't smell anything.

Gobin insisted some days are better than others and managing the odor is her daily struggle.

On a rare outing, Tammy took her students on a field trip to Seattle's Pike Place Market to prove her point: people assume the worst. We posed as tourists with a home video camera and watched people react to Gobin.

As soon as she and the kids stop to listen to street music, a man sitting near her gets up and leaves. In an elevator a man standing next to Tammy rubs his nose.

And in a fast-food restaurant minutes after she sits down, the people in the next booth take off. Gobin is convinced her odor made them move.

"This is my reality," she said. "I wanted to show you this, because people need to know."

The cruel comments began three years ago. First glares, then strangers sniffing her.

"A student said I smelled like his brother's sweaty gym socks."

No amount of soap, perfume or deodorant can mask her odor. And even worse: neither Tammy nor her family can smell it.

"I would have students come to me and say 'teacher your smell makes my tummy hurt. Your smell is giving me a headache,'" she said.

That's the day Gobin decided for her kids' sake she had to leave the classroom. Her home day care works because a young child's sense of smell is still developing, so they can't smell her.

Searching the Internet, Gobin learned her disorder has a name: Trimethylaminuria, a rare genetic disorder. But it took two years to convince doctors she had it.

After spending $20,000 on medical bills with no help from medical insurance, Gobing found answers from Dr. John Cashman, Director of the Human Biomolecular Research Institute in San Diego.

"They (medical doctors) don't believe the syndrome," said Cashman. His San Diego lab tested Gobin positive for Trimethylaminuria. The Research Institute is one of the few facilities that test for Trimethylaminuria, or TMAu.

"Tammy is a very unusual case," said Cashman. Most patients are born with it and struggle their entire lives. Gobing developed TMAu in her early 30s and was in good health prior to the diagnosis.

Cashman said the common thread is a failed FMO3 enzyme. It can't break down the compound Trimethylamine in the liver. Trimethylamine is the same molecule that give fish a fishy smell. For most patients, TMAu is a genetic condition, but some patients can contract it through liver or kidney disease.

"I think in the future there is going to be nutritional supplements or other approaches that will be helpful," said Cashman, but he can't even guess when that might happen. "There's a lot of things we don't know about this gene and its protein and that's why we're studying it in the lab."

Cashman said the Insititute has been studying TMAu for 10 years, reviewing analytical data and DNA sequences, but despite those efforts getting medical funding for the disorder has been an uphill battle.

"We don't have much funding for it, we're on fumes," said Cashman.

"Ignorance is the big problem here," insisted Australia's Rob Brown, a long-time TMAu sufferer. It took 47 years for Brown to get the right diagnosis.

Even his own family criticized him and didn't understand why he couldn't get rid of a rotten garbage and fish smell. The taunting began in grammar school.

"My first childhood memory is of the teacher telling me to go home and tell my mother to wash me in front of the rest of the class," he said.

Cheryl Fields, of Auburn, has battled TMAu for 11 years. "Either you like me or you don't," she said.

Fields said restricting her diet and a 'positive attitude' have saved her. Learning to manage it took time. "I don't cry as much and it's okay."

Unlike Gobin, Fields works in an office full-time as a human resources executive for a large corporation, so she deals with people one-on-one all the time.

"Until there is a cure we have to get up everyday and try," said Fields. In between juggling work and her TMAu, Fields is hard at work completing her Ph.D. dissertation.

Dr. Cashman says TMAu patients like Cheryl, Rob and Tammy can't metabolize Trimethylamine because of a lack of liver enzymes. The Trimethylamine is produced through the metabolism of choline, a nutrient found in most foods. The byproduct is a repulsive odor released thru sweat, salvia and urine.

Now the even trickier part: choline is in most processed foods, many meats, legumes, eggs, milk and fish. Gobin told me the only thing she can put in her body that doesn't cause an odor is fruit, french fries and water. "That's what I live on."

Gobin takes daily supplements to maintain good nutritional health. "I just want to live like everyone else," she said.

She is certain there are other TMAu sufferers who are struggling with this disorder and have no idea it's a metabolic medical condition.

TMAu patients can only manage their disorder -- there is no cure. Gobin is hoping by speaking out and creating awareness, vital research dollars may follow to help find a cure.

"We're an orphaned disorder," she said. "People don't want to spend money on us."

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Tammy Gobin, Cheryl Fields and Rob Brown say support is the best medicine and all of them found it through the Trimethylaminuria Foundation, a non-profit dedicated to education, support and research.

To learn more about the the Trimethylaminuria Foundation, e-mail TheTFNetwk@aol.com or contact them:

Trimethylaminuria Foundation
PO BOX 3361
Grand Central Station
New York, NY 10163

Phone: 212-300-4168

For More Information:

http://ghr.nlm.nih.gov/condition=trimethylaminuria

http://www.nlm.nih.gov/medlineplus/metabolicdisorders.html

http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Trimethylaminuria

http://www.nal.usda.gov/fnic/foodcomp/Data/Choline/Choline.html

http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Trimethylaminuria