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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  1. 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.

  2. 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.

  3. 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.

  4. 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.

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

  6. 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.


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