Smells Like Dead Fish
TrimethylaMinuria Can Ruin Your Childhood, Career and Social Life
Aug. 9, 2006 — - Camille has beauty and brains.
She's a former model and a Phi Beta Kappa with a master's in education. There's a part of her, though, that's not so perfect.
She smells like spoiled fish.
Camille says when she taught, students wouldn't come near her.
"They would say things like, 'Ew, this classroom stinks like dead fish.' They would call me 'Miss Fishy.'"
She asked that her last name not be used because telling her story was difficult for her. Camille described the odor as "a very heavy, intense, dark, deep smell."
"I didn't know why I was emitting such a strong odor. I mean, it can fill an entire room. Recently, it filled an auditorium," Camille said.
Her job as a teacher became excruciating.
"I was so focused on 'Do I smell? Do I smell? Are they saying things? Are they whispering? Are they laughing about me?'"
Smell Can't Be Covered
No matter what she does, Camille says she can't cover the smell. Neither showers nor perfume helps.
Camille has a medical mystery that she's struggled to understand for nearly 30 years.
It took her self-esteem and was taking her profession. She says she was often in a state of panic.
"I would open windows. I would leave the door open. I'd put fans in my classrooms. I mean the whole nine yards," Camille said.
She also felt a tremendous amount of pain. "I would cry all the way home from school. All the time."
Her childhood was no easier because Camille's ordeal began in first grade.
"One of my teachers asked me if I was showering every day. From that point on, she kind of sat me in the corner of the classroom. Kids would call me a freak. They would tell me I smelled like horse manure [and] dead fish."
We're instinctively programmed to stay away from the smell of dead fish because it helps keep us from eating spoiled or dangerous food.
That unpleasant odor is what Camille smelled like. Even worse, she couldn't detect the smell on herself so she never knew when it was out of control.
It made for a humiliating childhood.
"I had an incident in middle school where a bunch of kids cornered me in the cafeteria and threw tuna fish sandwiches at me," Camille said.
Rejected by the Adult World
When Camille got older, the insults continued. One of her first jobs was as a teller in a credit union.
"My supervisor would come by and spray my area with perfume, Lysol, and they put me in the drive-through section, which is separate from the rest of the teller area," Camille said.
Her social life was just as painful.
She dated on and off. If a man got too close to her, she says she felt like she had to let him go because he deserved better than her.
"I always thought, 'I'm a freak.' You start to see yourself as not quite human." Her life became more and more isolated -- she went out only when absolutely necessary.
Solving the Smell
She went to doctor after doctor, including specialists like internists and gynecologists. No one could help.
Just months after Camille started her dream teaching job, she quit under the strain. She thought about suicide.
"You feel incredibly helpless and hopeless. Tired of being ridiculed and feeling like a freak. So I'm going to take my life."
Fortunately, while in a deep depression, Camille found her answer on the Internet.
"All I did was type in 'fishy body odor,' then this one thing came up, trimethylaMinuria. They're saying that this chemical, trimethylamine, comes out of your body, and smells like dead fish."
Another computer click brought up the TMAU -- an acronym for the disorder -- Foundation.
Sandy, the organization's founder, also suffered from the disorder, and she didn't know it for years.
In fact, she remembers once calling the maintenance man to her New York City apartment to check her bathroom.
"It just smelled horribly. I thought maybe there was some kind of a problem with the sewer," Sandy said.
It wasn't the sewer, it was Sandy.
She didn't put two and two together until a co-worker explained why everyone was complaining about the bad smell in the office.
Sandy says her co-worker told her, "Sandy, I have to tell you that it's coming from you."
Her search for that elusive TMAU diagnosis took years and her life savings.
Sandy says she spent $27,000. She says she even had "eight different unnecessary and unwarranted surgeries."
Finally, a dentist suspected Sandy had TMAU, based on the smell of her breath, and sent her to Dr. George Preti of Philadelphia's Monell Chemical Senses Institute.
Preti is an expert in the rare genetic disorder, with only 600 documented patients in the world.
In these people, a faulty enzyme causes the buildup of a chemical called TMA, which smells like dead fish.
"It's a volatile chemical. It will come out through the lungs. It'll get into your sweat, your spit and other body secretions. So that's how it imparts its odor to the individual who has this disorder," Preti said.
Just about every food available can lead to the buildup of TMA: eggs, meats, beans, milk, cheese, bread and fish.
"The odor will vary from time to time in accordance with the patient's diet," Preti said.
Diagnosing Camille
To diagnose Camille, Preti performed tests to check her TMA levels, which were sky high.
Camille is an extreme case. Her diet is now restricted to foods that can't be converted to TMA to try to minimize the odor.
That leaves her cupboards and refrigerator almost bare.
She has developed other habits keep the odor at bay. She takes chlorophyll tablets every day. She showers often.
"I wash with several different products, and I scrub very hard. I use two different kinds of deodorant and a lot of perfume. Before I actually leave the house, I spray all of my clothes with Febreze just all up and down, and I also spray my feet and my socks with the deodorant for my feet," Camille said.
Finding Out You're Not Alone
In her whole life, she had never met anyone like herself. That was until "Medical Mysteries" introduced her to Sandy.
Sandy showed Camille all the "useless medications" she had been prescribed over the years for conditions she didn't have.
Sandy says she hopes her TMAU Foundation will help fund research for the orphaned disorder.
As for Camille, she wants doctors and the public to know about TMAU, and to devise a school curriculum to help children who are "different" not be ridiculed as she once was.
Copyright © 2006 ABC News Internet Ventures
More Information on TMAU
Find Out What's Causing That Fish Smell
Aug. 8, 2006 — TMAU is a rare metabolic disorder that affects men, women and children, from newborns to seniors, all races and ethnicities in most countries around the world. The presence of volatile trimethyl-amine (TMA) in sweat is the critical determinant, because it creates a pungent odor that emanates from the skin and surrounds the patient in an unpleasant aura.
This life-disruptive disorder is caused by both genetic and environmental factors. Living with TMAU is challenging, and it can adversely affect the livelihood of adults who have it and their families. Children with the condition could find it difficult to go through school without facing tormentors and bullies.
Currently, there is no cure and treatment options are limited.
FAQs
How do you determine if you have TMAU?
Getting tested is an important first step. A simple urine test will give you the answer; a blood test is available to provide genetic analysis. The prominent enzyme responsible for TMA N-oxygenation is the FMO3 gene.
Does TMAU have a signature odor description?
No. If you have TMAU the odor varies depending on many known factors, including the types of foods eaten, hormonal changes, other odors in the space, and our individual sense of smell and odor perceptions. The malodor has been described variously as cigarette/cigar smoky, garbagelike, feces, urine, funky, fishy and more. In a reported 15 percent of the diagnosed cases, a fishy odor persisted.
Who should get tested?
If you suffer from an unusual body odor that is volatile and pungent and negatively affecting you at work or school, then consider getting tested to rule out whether you have TMAU. Many get tested after ruling out other possibilities such as halitosis and glandular diseases. You need to know what you have before you can seek solutions.
Why is it so hard to get a TMAU diagnosis from my family doctor or general practitioner?
TMAU is a rare disorder. There used to be very limited medical knowledge readily available about most rare disorders or how to get tested for them. However, health care professionals willing to go the extra mile can now get helpful information from genetic and rare disorder databases.
For additional information contact:
Trimethylaminuria Foundation
P.O. Box 3361
Grand Central Station
New York, NY 10163
Phone: (212) 300-4168
Monell Chemical Senses Center
3500 Market Street
Philadelphia, PA 19104-3308
(215) 898-6666
www.monell.org
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