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!

29 thoughts on “Discriminated Against and Socially Avoided, Lisa Suffers from Trimethylaminuria”

  1. laura says:

    I’m really glad to see hope for people like us. I too have faced all the problems with people and harrassment that you have. Sometimes I just pray and try to make the best of things because God has a greater plan for us all. I hope we find a cure to this neverending battle. It is awful that something as small as smell can change a persons life,attitude,and habits. Let not our disease control us,but us control our disease. God bless you and be with you always.

  2. I’m so relieved that there’s people living with the same problem as mine. Everybody avoids me doesn’t offer me lift and gossipped about everywhere. I thought it was just bad hygiene washed 3 x a day , never speaks in public as everbody will grab their noses , I’m so depressed never goes out and withdrawn completely from social life till I started to search on the net if there were such a thing. I’m feeling better now after suffering 4 seven years now! Thanx for shariing your story!

  3. so sad says:

    THANK YOU SO MUCH FOR BEING SO BRAVE ANDOUTSPOKEN ABOUT THIS HIDEOUS CONDITION. YOU HAVE HELPED ME AND MANY OTHER SUFFERERS AS WELL AS EDUCATE NON SUFFERERS. THANK YOU!

  4. Tsholo says:

    This ridiculous condition is especially difficult for me since I live in a women’s only shelter. The they treat me drives me to want to take my own life.

  5. Bonita says:

    That’s right! You keep your head up and your spirit’s high. You are beautiful! the way you are. Don’t let nothing, nothing stop you in this world. You have just as much right to be out here in the world as everybody else. I support you!

  6. Jamie Lauren says:

    Hey I have been searching months upon months about this rare disorder, and I have come to a conclusion that the liver in all of us may be damaged, some more than others. I understand dieting can help certain individuals but the rest are left with no hope. For starters, I believe we should all try cleansing our livers then begin eating low choline diets. Obviously that is easier said than done, but you have got to step up and try something. No one with this situation should be left uninformed about helpful tips. Im going to start a YouTube channel soon. email me at zenetam@yahoo.com

  7. rose says:

    hello,,it relieves me to know am not the only one with fish odour disorder.. I noticed mine back at 2008..and still got it(2016),, I gathered the courage to start my treatment recently and hoping the smell is gonna go away..it really hurts when ppl around me point fingers and say I smell like feces.. I pray that am gonna gain my self-esteem back.

  8. Lily says:

    I had a friend in my teens who had this body odor…Fishy kind of I guess. It was very strong and whenever I visited her at her place, it was overpowering…Maybe someone else in her family had it too I don’t know. Back then, I didn’t know what it was and never told her about it because she was my friend and I didn’t want to hurt her feelings. My mom would go crazy when she came over my house to hang out and sometimes sleep over… She would tell me what is that smell?!!! She never told her about it though. I guess she had that disease… I totally feel sorry for people with this condition! :/ Hopefully a cure will be found.

  9. Bonita says:

    The cure may be folate, or folic acid, which cured mine. Choline needs folate to be processed, they are in complex balance. If the fish odor is accompanied by occasional fatigue, gas, and tender mouth membranes, you have a folic acid deficiency.

  10. Nicole Ross says:

    Until two months ago I did not know what was going on with me. I am most had a nervous break down from the whispers at work one day I went home to shower during lunch and my husband joined me in the shower and finally smell what I smell them what people were talking about. I’ve put in a little more effort to keeping the smell down or at least under better control but some days it still gets away from me. I keep everything else close nails hair on point to offset anything and want to say about me and I’m smart. In every place of employment I’ve managed to make myself valuable; so valuable that the smell did not even matter to the bosses.

  11. Kitkat says:

    I’m so tired of trying to ignore the hurtful things people say and just living the experience on a day to day basis. Tired of researching. Trying this trying that. Going broke trying product after product. shower three times a day, Maintaing hygeine through out the day at work can’t have normal lunch and 15 minute breaks cause I’m too busy scrubbing with soap and water brush teeth every chance I get. ALL A WASTE OF TIME. I feel like giving up on life, this is no way to live. This is a disability that causes mental trauma. I have a child and he is part of what keeps me going but I’m so depressed and tired of living. I stay away from family gatherings or friends. I’m tired

  12. Latoria says:

    Hi Kitkat!!
    I know exactly how you feel! I did the same things. I’m here to encourage you that you will come out of this victorious!!!!
    Eating a diet of foods that are low in choline helps alot and going totally vegan. Taking activated charcoal and Nullo tablets help. Nullo is copper chlorophyll and has been scientificly proven by nih.gov research to lower the odor. Any supplements you take, make sure they are VEGGIE CAPSULES and NOT gelatin based…gelatin is animal derived and all animal foods are high in choline.
    Also, getting rid of any yeast/candida overgrowth in the body helps as well, as yeast itself is high in choline. I’m taling Garlique supplements and cutting out carbs, sugars and fruit for a while until my candida overgrowth is under control.
    This is a disability that is beyond our control so you don’t have to worry about what others think. As long as you know what’s going on and you let hr at your job know. Stick to the regimen above and things will get better!!! If you ever need extra support, I am @latoriashanae on Instagram.

  13. thuthbetold says:

    So many people suffer from this condition. We need to come together and truly support one another, contact one another ,connect and encourage one another, so we don’t feel so isolated,rejected and alone with this burden we bear, leave ur e-mail address, or phone # and state u live in so we can start connecting you with people near you that you can contact and socialize with . we desperately need to come together and make an effort to call,talk,share, release,and know there is someone out there. even in ur own city or neighborhood . Don’t suffer alone. riccw24@gmail.com

  14. Susan says:

    Hi kitkat. I do not suffer from this particular condition but I have psoriasis and had this from age 2. I can relate to your feelings of hopelessness. People are cruel especially when they are ignorant of a medical condition. I actually never heard of TMAU until just now. I can’t help with that but I can say keep searching for solutions. Science may catch up within your lifetime. And please don’t give up on life. I know you’re tired. Who can blame you? But it sounds like this is a good community.

  15. Christia says:

    Hello Well I just read everyone comment and I am so frustrated because I am a very clean hygienic female and TMAU really changed my life completely becoming isolated from people and my so called friends knowing for decades have turned their backs on me and my family talks about me like its no tommorrow. I feel as if I am suffering alone this malodour started back in 2015 and I kept brushing it off as if its something else but just until recently that I started noticing certain foods I been eating start causing a fecal odor and my daughters would be like whats that smell is it in the air and I just start piecing it together because it will happen every time I eat some processed. I have tried going on paleo diet it helped but its expensive and right now I am financially , and I also went gluten free because I think that was a co factor in my symptoms. I still on the hunt for a solution to reduce my odor I heard that Reservatol helped a lot of people so I am trying this and I hope I have a good outcome.

  16. Anonymous says:

    I am crying as I write this. I feel so hopeless. My parents tell me the smell is all in my head, even though it is very clear to me that they can smell it too. I don’t have any friends and my self-esteem is non-existent. I am tired of crying myself to sleep every night. My mere presence is a pain to those around me. I just feel like giving up…

  17. Tasia Crenshaw says:

    Hello
    I have been suffering from TMAU since 2005, I was 9 years old at the time. I didn’t realize it was TMAU until I was 21 in 2017. I’m currently trying new diets and supplement’s and trying to stay positive.
    I wish you all luck! ❤

  18. Debbie says:

    It is interesting you say you need folate to process choline. If you have a mutation of your MTHFR genes, you can not change folate to methylfolate. This could be an answer for some of us.

  19. selena says:

    please don’t give up, it gets better, just be strong, your mind is capable of anything, these people do not matter, everybody will die anyway.

  20. malisha says:

    Hello everyone..I too am a sufferer. I’ve found out about the condition some years ago when I was watching the 700 club with Pat Robertson..He was praying for others and I received a word of knowledge for myself on that very day. Then the very same day..later in the evening I saw a program on the news called inside edition..they followed two different females around with the camera to witness the horrible experiences that they live with everyday. Long story short it was then when I happen to have put a name to this overwhelming medical condition. Can i say that I was relieved..yes. I was so relieved to know that it wasn’t just in my head and that it was others out there just like me with the same story as myself. It was then that i was introduced to many other sites were I became a regular..Where I would go to speak,read to listen to others..to get advice, to give advice, to share recipes,and to share natural supplements..Today it’s still a struggle from time to time..day to day..but would I rather give up on my life to live.. that God has given me..No I wouldn’t..regardless of how difficult things may get..I will not..and refuse to let the ignorance of the the devil and his minions defeat me..I sit here today on this very day trying to complete my first ever attempt of being granted disability-social security and I needed to get the actual spelling on tmau..so it was then that I came upon this website.. Now that I have I will be visiting from time to time as I have been needing some encouragement..a lift me up..so I can continue to fight this battle with the help of you all and my number 1# trusted friend..and Father 1st… Jesus Christ! Love you all in Christ..may you all stay well and seek him(Jesus+God=is one)first in everything you do..After all he is our creator.

  21. April says:

    I’ve spent years watching people around me walk around and closing their noses as they walk past me. No one wants to sit next to me in meetings, or stand close to me. I shower three times a day, I carry a spare change of clothes with me to work, I re-apply deodorant and perfume during the day, yet nothing ever seems to help. I’ve asked family and friends and they tell me they can’t smell anything, that I must be going crazy and making up excuses to not go work. I haven’t been diagnosed with the condition, but after some long research I think this must be the cause. This invisible body odour has killed my confidence, I don’t feel like participating in anything anymore, people laugh and scream things out like ‘I wish there were showers at work’ or ‘ I don’t like sitting next to certain people cause they stink’. They don’t understand how painful it is to hear that an hour after showering. Nothing ever seems to stop the smell, even though I can’t smell it I watch every person who walks by to see how bad I smell. Makes me laugh sometimes cause there absolutely nothing I can possibly do, and I am being condemned for an invisible disability. It made me cry reading other peoples comments, I’m glad that I’m not the only one out there with this problem.

  22. My disease may b a little different, it effects only my breath, have had bad breath my whole life, am now 78, was told about it at 21. It just about ruins Ur social life, I can talk to people face 2 face, always looking away and then the look at u funny or caught Ur breath. Have tried everything under the sun 2 find a cute. No luck yet. I know there r far worse things in life 2 b saddled with, but not easy 2 live with. I’m 78, so have just accepted the fact. But still looking 4 the cure.

  23. M says:

    I live in a major city and take trains and cabs. I have noticed Everytime I get next to someone they hold their nose or swipe their hand to their nose. My friends have also done it but don’t tell me anything. Which Dr. can I see to get it diagnosed? Other than diet what other methods can I use or sprays available?

  24. inherited says:

    I feel your pain. We are classed as dirty. It makes me sick to my stomach. This is an inherited disease. We need to educate the ignorant people of the world. I know I am a clean person and my family and friends know that too. It robs your confidence, and your who life. Being misunderstood is the worst. People treat you so poorly. I have always lives by the law of the land. Treat people the way you want to be treated no matter what! TAMAU. Is no joke, people have committed suicide by it. It is sad and hard to live with. It ruins your life. We need to have a disability insurance for it because no one wants to hire someone who has a chronic stench!

  25. Mary Joyce says:

    Hi!I’m Mary.I’m just currently 19 yrs. old now and i’m suffering to an endless odor.It’s very helpless feeling of mine that i can take to control.I’ve been paranoid of searching the type of remedies in order to get rid off out to this problem.I get such harrassment and painful words from others that intended me to give up.I am worried that a month from now i will be on at school and will be a 1st yr college but still i can’t find any solution.Please help of what should the best supplements should I take.I’m still studying and I don’t want to stop because of this.Please Help me.Thank You.

  26. mk says:

    I had visited a doctor once and he saw nothing. I’m not sure if I had this particular TMAU but what I know is I have a body odor and a bad breath. This started when I was 11, I am now 39. I thank to my parents they enrolled me into a religious school and became close to God, and mind you it was like I was sealed until I graduated college and earned my degree, and even land into good jobs. Now, when I went back to those years, yes I really did suffered even today because what I thought that when I wear a deodorant, I feel confident. Maybe I could say I have a mind conditioning that I accepted my condition and just ignore those reactions. I also tried a lot and still searching, because even after I showered the smell is there. I only got few friends, I can still go out with some other friends for dinner. So what I’m saying is go out and chill God is with you ask for his guidance always, maybe you are thinking mine is not worst, it is. I have read all of the comments and I went through all of it, there is also one time, I eat my snack inside a toilet, I was so down. While searching, I have seen a video of TMAU sufferer, and had success in oregano, https://www.youtube.com/watch?v=xIBaSiABDk0
    See if it works for you. I plan to try as well. Mind you, I am married to a beautiful woman and I always thank her, she always stands by my side. And of course to my son, who showed no dismay on me, I know he knew it. God is watching, cheers!

  27. Egyptian says:

    I am married as well. And I was on top of my game as much as possible trying to make sure I didn’t smell when I was dating the guy I’m married to now. When it came down to it I told him about my disorder. I was tired of changing shirts cause he made me nervous.I explain how there’s no cure and how I been friendless for a long time. It’s true I can only use certain soaps, drink & eat certain things. And I love the gym yet cant go when its pack. Cause people say how awful I smell. The employees of the gym are the loudest. And yet none of that bothers me because I remember the day my dad was embarrassed of me. I was 13, it was Halloween and he said a girl that can’t wash under her arms can’t wash her ass. He announced this in front of my four brothers and his girlfriend. Who laugh. We had just got back into the car from a Haunt House. I was a daddy’s girl all the way until that day. I realize if the very man who help made me, can be so cruel.This was only the beginning of my suffering to come. I have two jobs now and I am happy most days.what I like most about my job is I’m alone. Also I no longer eat red meat. Only chicken, turkey, and every now and then shrimp.I eat only grain bread. I love Reese cups but I’ve said Goodbye to peanut butter years ago. After I decide mental health is more important. People are gonna talk, let them. Just do u & keep it moving. I have two bad days every month and that’s because I can’t say goodbye to eggs. And those two days I choose to try new things to see if I can Eat without consequences.
    Life is short. Don’t u dare give up. There’s gonna be days u crack so don’t hold back, let go.If u dont it will build up and thats worse. Just try to never stop loving yourself. I’m happy and married because I accepted a long time ago no one will ever love me like me cause they don’t understand. Doesn’t mean Imma fail cause of my limitations. I’m just different. We ARE just different.
    I have the bad breath and odor comes out of my pores. When I eat fish or red meat it’s my under arms(B.O) . when I have peanut butter, nuts, wheat bread , potatoes or milk from wheat fed cows it’s my breath, and my private area. So I try to stay on top of everything. P.S. my husband ask me why I don’t like games. I said Pssh. My everyday life is a game. ( will she smell today or will she not) And yes I have a weird sense of humor. BITE me.
    Until later.
    egyptian

  28. Keta says:

    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.

  29. Kec2274 says:

    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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