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. Tasia Crenshaw says:

    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! ❤

  2. 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…

    • 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.

  3. 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.

  4. 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

  5. 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

    • 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.

    • 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.

  6. 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.

  7. 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.

    • 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.

      • 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.

  8. 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.

  9. 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!

    • 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

  10. 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.


  12. 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!

  13. 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.

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