A teenager diagnosed with a life-altering condition has opened up about his daily experiences.
Many individuals can relate to the constant struggles of managing a chronic illness.
While certain conditions are mental or neurological, others manifest physically in unexpected ways.
One teen is bringing attention to ‘fish odor syndrome’, a condition that might be unfamiliar to many.
For those affected, it can significantly interfere with their social interactions, education, personal relationships, and more. It can even influence their dietary and lifestyle choices.
On Reddit, the teenager took to r/AMA or Ask Me Anything, inviting others to freely ask questions about his condition.
In his post, he shared that he’s been dealing with this condition for over three years.
He explained: “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.”
The Cleveland Clinic describes Trimethylaminuria, or Fish Odor Syndrome, as ‘an uncommon condition that makes people smell like rotten fish.’
With an occurrence rate of only one in 200,000 or one in one million globally, and often arising from genetics, illnesses, or diets, it can be challenging to diagnose.
This condition is a metabolic disorder, unrelated to skin or gland issues.
Unfortunately, there is no definitive cure, but individuals are advised to adjust their diet, reduce stress, and consider medication to help alleviate symptoms like unpleasant body, urine, or breath odors.
The teen describes his experience with a severe case of secondary Trimethylaminuria (non-genetic) as challenging.
When asked about the impact on his relationships and treatment plan, he mentioned that using probiotics and other gut health measures can provide slight improvements, but he must always consider his gut health before eating or drinking, which can be exhausting but worthwhile for the small positive changes.
He explained: “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.”
He noted that ‘relationships are not easy’ and sometimes even his family doesn’t fully understand his situation. However, he finds solace in a supportive best friend, despite the difficulties in socializing due to his condition.
The teen first detected the odor around age 14, initially attributing it to poor hygiene. A doctor’s consultation later clarified the true nature of his condition.
He described the odor as similar to ‘fish or poop’ and expressed a desire for greater awareness about the condition.