The story of M
Trimethylaminuria (TMAU; primary trimethylaminuria), also known as fish odor syndrome or fish malodor syndrome, is a rare metabolic disorder that causes a defect in the normal production of an enzyme in the liver.
There are many people, who are living in America and across the world, trying to overcome a seriously complex, but unique condition called, TMAU (as mentioned above). It’s a condition that chips away one’s ability to function in a society that demands perfection and outcast’s anomalies. The obstacles we face in life while dealing with this rare disease, makes what seems like the simplest tasks, such as attending college or buying groceries, extremely difficult. How? You might ask. Well, that’s tough to explain without having a video recording in front of you to show people reactions when we are nearby. But please, if you can, just visualize smelling like fish, or rotten garbage after showering 30 times and walking into a store just to, minutes later, be embarrassed, and sometimes harassed by strangers who react negatively to that smell you cannot control. It’s emotionally draining, especially when people start to demand an explanation for a life you shouldn’t have to explain, your own. The way people react or respond to the smell TMAU produces show those who try to manage it that it’s the smell of TMAU that repels and offends people, not our natural odor. So what the TMAU community has concluded is that the majority of the public who are misinformed or unaware of our condition, end up becoming accidental bullies, turning a small misunderstanding into a big deal. In addition to that, there are but a few support groups online where people dealing with TMAU are able to find hope in empowering themselves for a brighter future. However, it’s not enough to sustain ones’ faith in pushing forward. No matter where we go we are being silence by everyone we turn to for help. So, I come to you, on the behalf of my TMAU brothers and sisters hiding in the shadows of misinformed people, pleading for your help and a chance to speak up. My overall mission and purpose in life is to share my story in order to raise awareness about the reality of a socially isolating rare disease and to save someone else from feeling like an outcast.
Find others with Trimethylaminuria on RareConnect, the online platform for people affected by rare disease