Discriminated Against and Socially Avoided, Lisa Suffers from Trimethylaminuria

Living with a disorder has never been easy, but turning something around for the better is a great goal. My disorder is Trimethylaminuria (TMAU).

TMAU, also known as fish odour syndrome or fish malodour syndrome, is a rare metabolic disorder, where the body loses the ability to properly breakdown the timethylamine (TMA) found in certain foods into timethylamine oxide (TMAO). Trimethylamine then builds up and is released in the person’s sweat, urine and breath, giving off a strong fishy odor.

In my experience, it brings bout social avoidance, mainly because people feel as though you do not practice good hygiene. It also creates financial problems, because companies will not hire you, as they base their hiring on perception. Once you have finally obtained employment, you are faced with harrassment, such as I was, having people spray you with lysol or perfume, being removed from our bus system to walk across town, or not being served at restaurants.

I have obtained an MP3 player to listen to my music, use supplements, and have changed my diet . I have also started a campaign for public awareness of my disorder, including information on assistance. This disorder will not defeat me; I will win!

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Global Genes Comments

  1. Hello everyone, I am 46 years old now but maybe about 5 years ago I started to notice that the man I was dating let his niece stay with him and from the time I first met her she would be very standoffish. But I just took as maybe she had an attitude problem, and we just started staying at my house. Then one day at work people would come by my area and say “something smells like fish over here.” Me being a very clean person never thought anything of it because I just knew It wasn’t me, I had been working there for 3 years at that point and never was treated different. But slowly over time more and more people would make comments about something smelling like fish when I came around, people who used to talk to me stopped and would avoid me at all cost. So I started asking friends and some family did I smell, everyone said no… one day at my cousins house her husband came down the stairs and said even before reaching me that I must be their because it smelled like fish…… after that I started to notice that people in public would hold their nose or make a face a me like I disgust them. I have been to several doctors and the all say the same thing “They don’t smell anything” I started to feel like I was losing my mind and on the verge of an nervous breakdown. I had never been one to really care what other people thought of me ,but this has made me contemplate ending my life. I don’t trust anyone, I am in debt because I don’t want to go to work to face the humiliation and stares, I don’t go anywhere unless I ABSOLUTELY have to, and the only reason I haven’t ended my life is because I have two BEAUTIFUL grandchildren who ABSOLUTELY adores me (smile). I’ve tried to talk to the people closest to me and they all just brushes it off like I’m being dramatic, and I just don’t want to work. I really don’t know how much longer I can smile and nod like I’m ok, then silently cry myself to sleep. That is when I can sleep, this has really consumed my life.. I really would like to talk to anyone going through the same thing.

    • Hi Keta. I’m sorry you’re going through this, I am also going through this at the moment. I’m 29 year mom with a toddler. The first time I notice I had this was in middle school. It was really hard!! I would get made fun of all the time, no one wanted to be around me. I had no friends bc of this! I told my mom what was going on and she took me to the doctor, and he said that there was nothing wrong with me and told me it was all in my head…but I knew different bc everyday at school everyone that came around me or had to sit near me would say nasty things about me saying ( someone smells like dead fish) (go take a bath) school was hell!! It continued into high school, but the last year of high school it got better on its own so I just put all that stuff behind me till this year!! 2018!! It came back and how I know is bc I was at the mall shopping, I was in a dressing room and there was two younger girls beside me and they kept saying (what is that smell!! It smells like fish)!! I knew it came back after all these years!! Now I’m trying to find ways to control it by looking on here and reading other ppls stories and seeing if they’re having any success. If you would like you could write me on my email kec2274@email.vccs.edu and we can go from there. I think it would help to find someone else with this disorder and talk to them about it and find ways to beat it. If anyone else is dealing with this feel free to write me, It would be nice to talk to someone about this, thank you.

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