I smell like fish and no doctor knows what’s going on
What you need to know:
- TMAU (trimethylaminuria) is a rare disorder that causes one to have a nasty, fishy odour that is released through sweat, urine, breath, and reproductive fluids.
- Trimethylamine is responsible for the pungent smell that comes out of rotten fish –this explains why it is called a fish odour syndrome.
Of all the five human senses, the sense of smell is the most critical. Olfaction is so special that it even plays a role in taste.
But it always shows up even when unwelcome. It knows neither dignitaries, nor the lowly. Unlike the other senses, you can hardly overlook smell.
Oscar Ikinya, who believes he suffers from Trimethylaminuria (TMAU) commonly known as the fish syndrome, knows the contempt that comes with an unpleasant body smell.
For more than 20 years, Oscar, 43, has been living in isolation because of his body odour. He moved to a different region in the country and for seven years, he has not visited Meru, his home county. It is the sniffy attitude that people have when they smell the air around him that makes him live in solitude.
Evidently so, when Healthy Nation confirmed that it would wish to have an in-person interview with him, he was restless.
"I need to prepare. What time are you likely to be here. Please let me know in advance,” Oscar said.
Oscar now lives at the heart of the southern coast in Majengo, Kilifi County, a home he is building alone — no wife, no children, just him and his farm where he practises regenerative agriculture by growing fruits.
On the chilly Saturday morning that Healthy Nation visited him, he seemed ready, albeit with reservations to openly speak about his condition to the media, for the first time.
On the way to his home, the signature palm trees common in the coastal region did not sway as much. The sand was compact as a result of the previous day's drizzle.
To what extent did Ikinya prepare for the in-person interview?
"I didn't eat anything this morning because some food types make my condition pronounced. I took two seeds of Moringa, that’s usually my daily bread. When you told me that you were almost here, I had to freshen up again just to make you feel comfortable interviewing me,” said Oscar.
Listen to the writer's conversation with Oscar on the Nation Reports podcast below:
At first, the smell that Healthy Nation hoped to experience when meeting Oscar was faint. The air around him was as crisp as the ocean breeze, nothing fishy about a man who purportedly smells like fish.
"I sometimes get this kind of mixed reactions. My cousins tell me that they can't smell my odour. Other times, I just see it on people's faces, the nose touching and all and then I know that my smell is making them uncomfortable,” he explains.
The smell, finally, felt like wet wood extracted from a muddy moist store. After some time, we got used to it. Oscar’s first 20 years of his life were normal. He wore perfume like any young adult would to feel comfortable in his skin. He was not born with a foul smell, he did not grow up with a sickening smell.
Oscar links his condition to the aftermath of the infamous 1998 bombing that targeted the United States Embassy in Nairobi on August 7.
“I was a new employee, still on probation, working at Ufundi Sacco just near the US embassy when the attack happened. I remember there was a bank strike at the time and so there were no customers.
“I was looking forward to the weekend. The doors had been closed for new clients but most workers were in the vicinity. And then I heard a loud bang, which I later learnt was a bomb. I did not pay much attention to it as I was writing a sensitive cheque for a client,” narrates Oscar.
The loud bang drew the attention of Oscar’s colleague, who, out of curiosity, went to check what could be happening.
Unknown to them, terrorists had invaded their space and they were caught up in the surprise attack. Oscar remembers taking cover, lying low and, in his mind, he thought he had dozed off at work.
“I woke up from the ground and there was this blinding dust that had filled the air. I thought it was a dream and so I woke up from my ‘sleep.’ There was a lady beside me making a phone call, screaming and we were all trapped under the rubble."
“I was soaked in blood. I doubt whether it was all my blood. When I touched my head, there was a plank of wood that could not come out. And the pain…”
Oscar still cannot figure out the strength he had to endure the pain of a plank of wood in his head. It was clear that they had been attacked when paramedics took him and the lady who he woke up next to, in an ambulance.
Later, he learnt that most of his colleagues who had gone to check the ‘loud bang’ were among the 200 lives that were lost in the attack. Out of the 15 bank employees, only five survived.
He was lucky to be alive, even luckier not to have been badly injured. His doctors told him that his ear drums had ruptured and his ears and face had shatters of glass all over. His head was the worst affected because he had to undergo two head surgeries in a span of two days.
When he was discharged from hospital and was in good health, at least physically, he went back to work and the first thing he noticed was people’s subtle reactions around him.
“People did not have the courage to tell me that I did not smell nice. I could see it. They touched their noses. They avoided me. When they had to work with me on a project, some made sure that the work was done in a short time to save their breath. Only the courageous ones could tell me, but most who did, did it to hurt me,” explains Oscar.
He tried to figure out what could be happening in his life. He could not do that without a doctor’s prognosis. Oscar tells Healthy Nation that he lost count of the doctors and specialists he went to that could not point out his problem, leave alone give a solution to it.
The only specialists he did not go to, he says, was a gastroenterologist –one who deals with any form of digestive health disorder.
"I tried to figure out what could be happening to me. I think it is the overload of the medicine that I got post-surgery,” he says
When he noticed how distant people had become, he, too, ducked.
“When it gets to you that people do not want you, you will want to keep away because it is very embarrassing. Nobody wants someone who doesn't smell so nice near them,” he says.
Another unfortunate turnaround happened in his life in 2007. He, among other colleagues, lost his job.
"I wish I could say for a fact that it is my condition that made my former employer fire me, but I can't. They called it 'restructuring' and just like that, I was laid off. I had been a performer at work. I don’t know…"
His unemployment period was time for soul searching as he had not yet found a diagnosis for his condition.
He started scourging the internet for a possible self-diagnosis of his condition. 'Odour' and 'persistent odour' dominated his search history for a long time.
"I wanted to find out a possible link to my body odour, I wanted to know if there’s solution to my problem,” he says
His research led him to a community of people whose symptoms were like his.
"I could relate with the stories people with TMAU shared online. Sad stories. Stories of rejection and depression. It was just sad. I was sad,” he says.
He remembers scrolling through Facebook as the internet had become his only friend, and came across a page where women were having an online banter discussing the stench of their domestic managers.
“The women talked negatively of the house helps. House helps are destitutes who take care of their children but all they could do was talk about how they smell. I felt so bad,” he says, breaking down. He still had to deal with the bomb blast post-trauma and the loneliness as he had just lost a job.
"It took me to a very dark place. I have known demons like no other. You see, most of the time you want to be alone because you don't want to be bullied or have people react negatively towards you," he says.
This dark time of his life made him seek psychological support albeit online. He met his guardian angel, a Canadian therapist who uses a technique called emotional freedom tapping to help people get out of mental turmoil.
"In this technique, you think about what could be hurting your emotions and weigh the extent to which it does that. And then tap pressure points like at the edge of the palm or below the pinky finger,” he explains.
Oscar’s food and lifestyle had to change as well. "I decided to grow the food that I eat. I had to switch to natural remedies and started growing things like Moringa, vanilla, dragon fruit, aloe vera and I had a diet overhaul.
“I could be a 'doctor' right now because the medical information in my head right now is a lot, I keep researching about my condition and the healthy food to eat."
Perfumes, for Oscar, are not the best option for masking the smell.
"I tried buying perfumes, but I learnt that the worst thing about it is that it makes things worse. It's like spraying perfume at a place where someone has had a long call. It doesn't make sense. It just makes things worse,” he explains.
The last time Oscar tried dating was about 10 years ago. His relationship did not last, for obvious reasons.
“You can't sit down with someone because you will get that negative reaction from them. No one was accommodative. For my own peace of mind, I just called it quits.
“I don't want to be around family to subject them to my condition. Even here, my neighbours have isolated me. Sometimes when they pass near my home, some of them start faking a cough,” he says
To this day, Oscar has not received diagnosis from a hospital in the country as he has not met a doctor who definitively told him that he has the fish odour syndrome.
He has since met a community of about 20 people drawn from different parts of Africa, majority of whom are Kenyan — about 13 Kenyans, who have similar symptoms as his. He has since created a group name, Mebo Africa and seeks to unite more people like him and hopefully find a solution –perhaps, local medical practitioners. "We have virtual meetings because most, if not all members, try as much to avoid public transport because of the effect it will have on them and the people in the matatu. It feels nice to help or talk to someone with a condition like yours," he says.
What is TMAU (Trimethylaminuria)?
It is a rare disorder that causes one to have a nasty, fishy odour that is released through sweat, urine, breath, and reproductive fluids.
Normally, it is caused by a faulty gene that may have been passed down from their parents.
Trimethylaminuria occurs when a gene called FMO3 does not work correctly. However, there is a secondary type of TMAU that may not be inherited. This usually happens after treatment of large doses of dietary triggers that affect the chemical that causes this condition.
Trimethylamine is responsible for the pungent smell that comes out of rotten fish –this explains why it is called a fish odour syndrome.
Trimethylamine comes from specific chemicals (choline, carnitine, TMAO) found in certain foods such as red meat, egg yolk for choline, fish, milk and poultry for carnitine and fat dairy for TMAO
Research shows that the smell does not come at all times, it could come, and go. The disease can be diagnosed by rotten-fish odour presence but since the smell does not occur at all times, the diagnosis is hard to come by.
Unfortunately, there is no cure for TMAU just yet, but people can manage it by avoiding eating certain types of food. One can also avoid vigorous exercise as it is likely to make them sweat and should be relaxed at all times.