Fish Odour Syndrome: Dermetel aims to give patients a breath of fresh air

man with bad odour in elevator with people
© iStock/hoozone

Dermetel is launching two Phase I clinical trials that focus on the rare disease, Trimethylaminuria or more commonly known, fish odour syndrome.

Fish odour syndrome or Trimethylaminuria is an inherent error of metabolism that occurs due to ruptures in the FMO3 gene. The condition causes permanent, life-changing body odour that persists irrespective of impeccable hygiene and a clean diet.

Edit the faulty genes

The first treatment was created by immunologist Dr Tamara Nicolson, PhD. The treatment involves unobtrusive liver surgery that edit’s the faulty genes responsible for the body odour. The surgery paired with weekly enzyme replacement therapy infusions means the patient no longer produces the fish smell.

Oral Supplement

The second treatment involves an oral supplement that involves cutting edge use of Methylophilus Methylotrophus, which is used as a source of nitrogen for growth. The supplement was conceived in-house by a team of microbiology and medical students, with consulting from Dr John Christodoulou, Sydney Medical School, who devised the idea of the supplement and Dr Brian Hanley, PhD of University of California, Davis.

The patient takes between one and five supplements a day, which curbs all odour for a period before another supplement needs to be taken. The medication takes around three days to begin working and enables the patient to lead a more normal life.

Dermetel is running both trials simultaneously in both London, UK and Raleigh, North Carolina, USA, which allows people in both countries to register to take part in the trials and hopefully help improve their lives for the better.

About Dermetel

Dermetel is a non-profit organisation in the United States focused on running programs and services that alleviate dermatologic health disparities. Founded in 2011, the organisation was founded by students for patients worldwide and is now managed by a professional and experienced team.

Dermetel’s two primary areas of interest are in running Phase I to III clinical trials for rare dermatology diseases sold to larger pharmaceutical companies at the start of phase IV and in providing teledermatology free clinic services to disadvantaged, underserved patients.

Furthermore, Dermetel also maintains a secondary commitment to help assist children with rare dermatology diseases develop their self-confidence and make strong friendships.

Click here to find out more about their clinical trials

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54 COMMENTS

  2. I am dealing with Chronic bad breath. Despite dental cleanings, nothing has helped the problem. Will this medicine stop the bad breath? It is causing severe depression in my life. Please help me.

    • The bad breath is also a result of this disease! I’m going through the same thing plus it comes off my body as well… not all the time but the bad breath is all the time. It’s sucks. I’m really kind, smart and beautiful. Haven’t had a boyfriend in 4 years and I isolated myself from my friends. I can remember it started 8 years ago

  4. I been dealing with it for several years and since not all people can smell it my family and friends don’t believe but then thier lots of other people that can smell it and I can tell its hurtfull for people to think you don’t bath when its tmau even my doctors I tried to tell never heard of it or gave me info it was all in my mind I wouldnt wise this own my worst enemy. Mine smells like poop #Heartbroken it just happend on day.

    • Omg! Me too! These Dr are so uneducated. It’s sucks so bad. It’s real it not in your head. The smell can travel far also. I actually meet two other people that had that. They didn’t tell me but the smell was like a dead rat. They both had that same smell. And… know I know I have it also. It’s so depressing. I’m sorry your going through this. I pray they find a cure soon.

    • Hate dealing with this especially going to work that’s where people smell it the most and they make it noticeable when they put on they mask when they finna come by me. I lost 2 jobs cause of this I need some help with this I tried everything like eating no meat, going vegan, and even tried antibiotics and still same resorts! This situation makes you wanna give up in life! Idk how long I can take it I’m trying my best.

  5. I have been dealing with this for several years. My family and friends don’t believe me because they can’t smell it But not everyone can smell it. But then thier are lots of people that can smell it. It’s very hurtfull for people to think you don’t bath cause they don’t know you have tmau. I haven’t been diagnosed but with all my research it has to be it. My doctor don’t believe me either one of them gave me a print out that said it was in my mind. I can smell it but not all the time. No bathing in the world can make it go away. Over the years I have had to deal with it and it’s hard but I have to. I wouldn’t wish this on my worst enemy. It started when I was 40 im 47 now but noticing there have been more people coming forward hoping for a cure. And Im one of those people. Hearbroken but life has to go on.

  7. Soy de México, y padezco este síndrome desde hace más de 20 años relativamente pudo a Dios me quite la vida, porque es muy terrible padecer está enfermedad.

  10. Desperately waiting for years an effective cure, for example special digestive enzymes/medicine, cosmetical products to elliminate this specific odour. Please help!

  11. Tmau destroyed my social life and career, it came with puberty and I am 40 now. About 1 month ago my children started to show the symptom – strong specific body odor. They are just 5 and 1! I knew, it is inheritatated condition, but I hoped, they are asymptomatic genedefect carriers, like all my relatives – no one except me, has the symptom – but they are not and this is a nightmare. Doctors have not heard about this condition and there is no cure. I am totally devastated. Please help, before this condition destrestroyes my children’s lives as well.

    • I have the same problem. It started when went on birth control and got worse during my first pregnancy and got progressively worse over the years. With peri menopausal sweats it’s very very bad. My breath and BO. My first daughter started showing symtoms at 11 and my second daughter is 10 and is just now showing symptoms. I’m devastated. My son only has bad breath mild BO.

    • Though I’m not sure that it’s TMAU, I’ve been suffering from similar symptoms for 5yrs now. Im trying to accept it and treat it with chlorophyll, activated charcoal and all the other supplements that i read from different forums to no avail. It feels like i am no longer living, just mere existing. Im from the Philippines.

  16. I have had TMAU my entire life. I am 48 years old and I am all for ANY solution to this problem!!!! I would be willing to participate in ANY test trial or surgery! I do not wish this condition on anyone!

  18. Please help me find a treatment living with TMAU is hell life and I hate my life and because of the smell I just don’t feel happy. No matter how much I eat healthy or shower. I would like to try this please do trials

  22. PLEASE allow me to participate in this trial. I am desperate to the point I don’t want to eat ANYTHING anymore for fear of smelling like a dead animal. It is a terrible curse that affects every aspect of my life. I know it embarrasses my whole family especially my two adult sons. My anxiety is uncontrollable when coming in close contact with anyone. I work in the medical field (Cardiovascular Ultrasound) and my condition makes it very difficult to do my job without making the patient sick from the smell.
    I have tried antibiotics, probiotics, Lactulose, activated charcoal, chlorophyll, riboflavin, essential oils, oregano and peppermint to no avail. I try to limit my diet to just avocado, cucumber, bell pepper, apple, blueberries and strawberries but find that very hard to live by every single day!!! I weigh 105 lbs and feel and look as though I am malnourished.
    Please help!!!

  25. I am also suffering from TMAU since I was young. U have terrible bad breath that just don’t go away. It has caused depression and self isolates myself. It hurts please help me.
    I graduated but can’t work because of this. I’m tired being made fun of.

    • Hi I,m 31 years old.Been living with Tmau for 13 years.Didnt understand where the smell was coming from but knew it was me.People can be sooo nasty.Im unemployed cos of this I get heavy anxiety.l use to be an outgoing bubbly person but not anymore,l pray they get a cure.My family don’t even know,I’m so embarrassed.😭

  26. Definitely looking forward to a solution for this awful disease. So sad, makes you feel so alone and hopeless. Been sufferring for too long. A cry for help!

  30. I am very interested in your study. Have you made selections? I have been dealing with this for years and could use some good news/cure. So many need hope from somewhere considering progress for this disease.

  36. Hi I’m 31 years old.Been living with Tmau for 13 years.Didnt understand where the smell was coming from but knew it was me.People can be sooo nasty.Im unemployed cos of this I get heavy anxiety.l use to be an outgoing bubbly person but not anymore,l pray they get a cure.My family don’t even know,I’m so embarrassed.😭

  40. Hate dealing with this especially going to work that’s where people smell it the most and they make it noticeable when they put on they mask when they finna come by me. I lost 2 jobs cause of this I need some help with this I tried everything like eating no meat, going vegan, and even tried antibiotics and still same resorts! This situation makes you wanna give up in life! Idk how long I can take it I’m trying my best.

  41. Me too… Had enough!! Not living any more… Nightmare 😣 please help! I have tried everything… Nothing help! Can’t live, can’t work…. UK here!! Asking for help!!

  43. By accident I found something (2006) that truly kills bad breath. I can’t tell anyone the pain I was in. Have nearly destroyed my teeth trying to cure. Worth a try.

  45. I would like to participate in this trial. Please contact me on how to participate. I have Tmau for 18 years now. Contact me because I will definitely participate and take the trials. Thank you

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