LIMPOPO – Phophi a civil engineer at Rainbow Civil a company in Mokopane said: “Even though living with TMAU is hell, I do not wish it upon my worst enemy.
“I have to live with a stereotype community that judge me before they know me and what I’m going through.
“I don’t know the exact number of people that have this disease but it is defined as a rare disease and estimated that one in 200 000 people may have the disorder.”
Phophi explained Trimethylaminuria is a disorder in which the body is unable to break down trimethylamine, a chemical compound that has a pungent odor.
“Trimethylamine has been described as smelling like rotting fish, rotting eggs, garbage, or urine.
“As this compound builds up in my body, it causes my body to give off a strong odor in my sweat, urine, and breath.”
According to Phophi this disease has a major impact on her life.
“The first time I realised that something was wrong with me was when I was a student at Pretoria University. People in the taxi would talk bad behind me and make noises.
“My worst nightmare came true the night I took a taxi from the university and the people in the taxi told the driver he must drop me of or they will all get off.
“The driver dropped me in the middle of Johannesburg at 21:00, 10 km from home.
“I phoned my aunt and through my tears and sobbing I explained to her what happened and asked her to come and collect me.
“I then went from doctors to specialists and after numerous tests the diagnose was made that I have a very rare disease called TMAU and it is incurable.”
Phophi said the disease interferes with many aspects of her daily life.
“It affects my personal relationships with friends and family, social life, and career.
“A simple thing like going to town or out with friends to a restaurant is a major issue for me, I overthink all the possibilities that could go wrong and rather stay home.
“I bath two to three times a day and when I’m at work I would go home in lunch time to take a shower.
“Sometimes I experience depression and social isolation as a result of this condition.”
Phophi feels that she wants to be a voice for other women who suffer with the same condition.
“If I can teach people about this disease and make them aware and willing not to judge too quickly, I will be very pleased. There is always a cause behind a problem and one should not judge from ignorance.”