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Living with Fish Odor Syndrome

Posted: 6:15 PM, May 01, 2013
Updated: 2014-06-18 11:53:02-04
Fish

TALLAHASSEE, Fla. (WTXL)-- When Lisa Mardis was a child, her classmates constantly picked on her.

 "The kids would pour washing powder on me and would jump on me after school," said Mardis. As an adult, the bullying didn't stop.

"At work, I was harassed, I was sprayed with perfume, I was left ugly notes," she added. Mardis has spent most of her life struggling with unemployment, homelessness and depression, all because of a medical condition she can't control.

It's called Trimethylaminuria, or TMAU. People with this condition have a strong body odor because their bodies cannot break down the chemical TMA, which is found in many foods.

"It comes out in the pores, in the breath, any mucus membrane, saliva, any excretory, urine," said Maria de la Torre, founder of MEBO Research. "It's extremely strong, very volatile; it fills up a room just through breathing through your nose."

            Some sufferers describe their scent as fishy, a reason TMAU has earned the nickname "Fish Odor Syndrome." Others say they smell like garbage, rotten eggs or even burnt rubber.

            "What happens is there are other chemicals in the body," said Maria. "Just like any fragrance, if you put some perfume on your skin, it might smell a little different on different people because of each of the various chemicals in your body, so that's why we need to find out about the other chemicals that come through."

Because of the strong odor, people with TMAU can't enjoy activities that may seem part of every day life for other people, like taking a trip to the grocery store, mall or movie theater.

 "I couldn't really enjoy that, because my focus would be on people's reactions to me," said Mardis.

De la Torre has had TMAU since birth. When her son also began to show symptoms of the genetic disorder, she decided to take action.

"I started this company with the idea of trying to unite researchers, experts and sufferers so that we could try to work together," she said.

De la Torre founded MEBO Research in her hometown of Miami. The public charity aims to unite sufferers, promote awareness and fund research programs.

"I realized there is some information, I just didn't know where to look," De la Torre said, "and there was a tremendous need to bring all this information together. So I did."

Since it was founded, MEBO has provided a safe haven for sufferers of TMAU from all over the world to come together and support each other.

For people like Mardis, it is another outlet for her to spread her message of hope.

"I'm here to let you know that you are viewed as a person, and unique, and never give up," Mardis said, "Because there is hope out there. We can support one another. We can be there for one another."

MEBO is a sufferer-funded, non-profit organization with branches in the United States and United Kingdom. To learn more about TMAU or get involved in helping MEBO's research efforts by donating money or volunteering with the organization, visit their website at meboresearch.org .