Teen diagnosed with incurable 'fish odor syndrome' reveals heartbreaking truth behind condition
Topics: Health, Reddit, Community, Food and Drink, Mental Health
Britt Jones
Featured Image Credit: Getty Stock Image
Topics: Health, Reddit, Community, Food and Drink, Mental Health
A teen who has been diagnosed with a condition that has changed his whole life, revealed what he goes through every day.
The daily challenges of living life with chronic illness are something that many people understand.
But while some conditions are mental or neurological, others are physical... and not in the way that you think.
One teenager has been sharing his life with ‘fish odor syndrome’, which you might not have heard of until now.
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For those living with it, it can disrupt how they socialize, get educated, have relationships, and more. It can even impact their diet and lifestyle.
Via Reddit, the teen posted to r/AMA or Ask Me Anything, which allows people to be questioned with no question off limits.
He began his post by explaining that his condition has been something he has lived with for over three years.
He wrote: “I have a condition that makes me smell really bad (TMAU) ama.
“Trymethylaminuria. I've had this condition making me smell noticeably really bad (and I mean really bad) for the last 3 and a half years. As you can imagine, it's not easy to live with. Ask me anything.”
Trimethylaminuria (Fish Odor Syndrome), is characterized by the Cleveland Clinic as ‘an uncommon condition that makes people smell like rotten fish.’
With only one in 200,000 or one in one million people worldwide having trimethylaminuria, and it being caused by genetics or illnesses, or diets, it can be hard to know if someone has it or not.
This condition is actually a metabolic disorder, and not something to do with your skin or glands.
Sadly, there is no cure for the condition, but it’s recommended that people with the illness change their food choices, lower their stress, and even try medication to reduce symptoms like, bad smelling body, urine, or breath.
For the teen, living with his ‘severe’ case of secondary Trimethylaminuria (non-genetic) has been hard.
When someone asked how his relationships have been impacted and what the treatment plan looks like, he candidly responded that ‘using probiotics and other gut health stuff’ can improve things minimally, but he can’t ‘eat or drink without thinking of my gut health, which kinda gets exhausting but it's worth it to see some results.’
He shared: “On the day to day... man, I struggle a lot. I don't have a lot of support and honestly, with this disease, after a while, your focus goes entirely to just not having people react badly to you so it doesn't bother me as much as it used to.
“Mostly, I'm just trying to get through each day. There was a period of time when tmau combined with other health problems made it really hard for me to go to work and school but I'm back at it now.”
Revealing that ‘relationships are not easy’ and sometimes his family don’t seem to understand what he’s going through, he does have a supportive best friend to lean on, despite struggling to socialize because of his condition.
He shared that he first noticed a smell when he was around 14 years old, and after believing it to be bad hygiene, he ended up seeing a doctor that explained the condition.
Calling it a ‘fish or poop’ smell, he went on to share that he just wishes more people knew about the condition.