Overview of Trimethylaminuria (TMAU)

By Jessica K.

 

Introduction:

Well it is somewhat ironic that I live in the USA and that my friend Anne (you may have read her article on Diabetes) asked me to write this so close to the US holiday known as Independence Day. I say that because Trimethylaminuria (TMAU) robs its possessor of their independence.

What is TMAU?

Trimethylaminuria, which from this point on for convenience sake I will abbreviate using its common abbreviation (TMAU), is also known as Fish Malodor Syndrome. It is a “rare” disorder which is caused by a mutated gene. It makes the person who has TMAU’s body unable to process a substance called choline which is something that other people’s bodies can process. This results in the person effected being perfectly healthy and normal EXCEPT that they will always smell horrible to other people. A person with TMAU may have horrible odors emanating from various parts of their body or from ALL of their body. They may also have halitosis (bad breath). Thus they cannot comfortably go out anywhere including school or work and are not able to be independent and go wherever they want to.

What makes me qualified to write this?

I am currently 22 years old and for as long as I can remember I have been tormented, particularly at school and often by my own family as well because people say I smell bad. Some say I smell garlic-like, some say I smell like trash or rotten fish. Some just pass to, throw at or offer to give me perfumes or sticks of deodorant.

Grade school was a nightmare for me from as far as I can remember but the real nightmare started in high school.

Because I can’t smell myself and I knew that I was as clean as other people (in fact usually cleaner because people were always telling me I stank so much that I was cleaning, rinsing, deodorizing etc. practically whenever I could get a free second), I thought until I was in my mid-teens that I was fine and that other people were just nuts.

About half-way through high school (age 16 or 17), I finally realized there had to be something wrong with me because my mother got so many calls from the school that she said one day “Do you want the police to take you away from us for child neglect! Why are you doing this?!?!” and then she WATCHED me shower for a solid week right before school and even though she watched me and I showered so close to time to go to school that I arrived with my hair still soaking wet she still got calls from the school by the end of my first or second class of the day. And yet to this day even though my mother is very understanding in everything else she refuses to believe that my smelling bad is not my fault and neither do the rest of my family members.

So after graduating high school I knew something was wrong but still didn’t know what and to make matters worse my parents wanted me to sign up for college or at least get a job.

I wanted to go to college more than anything but I couldn’t take the tormenting anymore so I tried to find a nice, quiet, little interaction with people, type job. After being confronted at my first job after a month I left because I was not fired but I was too embarrassed to stay. My second job lasted almost exactly 6 months but only because it was in a factory and there were only 6 other people on my entire floor so I had little human interaction.

After that I moved out of state to live with my boyfriend that I had met online two years prior. He accepted me even with my condition. So currently I live with him and his job pays my bills. I attempt to earn money whenever I can online and I also am fighting to get properly diagnosed and to get TMAU considered a “real” disability so that people with TMAU and other body odor disorders (yes there are other disorders) can start holding their heads a little higher and start maybe holding some jobs a little longer or at the very least collect disability benefits.

What TMAU is not:

It is not the same as hyperhydrosis (excessive sweating) however people with TMAU tend to sweat a lot out of nerves when around people because people treat them badly. As a result many people with TMAU labor under the misconception that they have hyperhydrosis and can end up having expensive treatments and even surgery that do not help them.

It is not a psychological disorder. People with it are not smelling bad intentionally because they have mental issues or want to ruin other people’s day.

They are also not imagining that they smell bad. Furthermore if they don’t want to work, frequently quit jobs or get fired or don’t want to attend school it is not because they are lazy.

It is not currently curable and most treatments are only temporary fixes.

It is not widely known about even by doctors

It is not technically considered a disability and therefore people with it get no consideration and no disability pay.

Why is TMAU “rare”?

There are not many reported cases of TMAU for several reasons so it is considered “rare”. However, there are many unreported cases that are not taken into consideration.

Some reasons TMAU and other body odor disorders are considered rare include the following:

1. People who have them often think that they are alright because they know they are clean and everyone else is just trying to be mean OR they know they have a problem but don’t know what it is and are too embarrassed to seek help.
2. Children with body odor issues are very often not taken seriously by even their own family or their family doctor. As a result they cannot get properly diagnosed while they are medically covered under their parents and when they get older they are either sick of trying to convince people or they no longer have medical coverage.
3. People seek help but even the doctors simply tell them to go home and shower because a lot of doctors don’t know about TMAU.
4. People with TMAU are incorrectly diagnosed as having depression, schizophrenia or other psychological disorders.
5. People with body odor issues generally do not like to advertise it because they are afraid that if they are known for it by writing articles on it etc. then they will have no chance of ever even GETTING HIRED for a job. Whereas if they don’t campaign to get it a recognized disability and take the “easy way out” they can still GET jobs and just wont be able to hold them for long. In this way they can “job hop” and still earn some money.
6. The final issue with getting diagnosed as having TMAU is the issue I currently have. People that smell bad quite often cannot hold jobs and therefore have no money or insurance with which to seek help. Since it is not technically considered a disability people with body odor issues of any kind also cannot collect disability compensation and have been known to sue companies for firing them for having a medical problem and LOSE because they are considered unhygienic, not disabled.

If TMAU is not considered a disability and is not curable or treatable than what is to be gained by getting diagnosed?

Well hopefully a bit of a knowledge base. The more people out there that can get diagnosed as having TMAU the more doctors and average people on the street will know it exists. Awareness may lead to a bit more acceptance, perhaps some disability compensation, higher self-esteem because people will know they aren’t imagining things and have paperwork to prove it and, yes, hopefully ultimately a cure.

What can people with general body odor issues or people that are fairly certain they have TMAU do to improve their lifestyle?

As I’ve mentioned above, there is no cure for TMAU, very few things help control it and those that do work for limited periods of time.

However there are a few things that can help a bit:

1. Avoid foods that contain a high amount of choline. Such foods include meats, fish and eggs as well as many other products. This DOES NOT mean become a vegetarian or quit eating entirely but be conscious of your choline intake and try not to take in too much in a day. Also avoid strong smelling foods and spices when you can such as onion and garlic.
2. Wear light clothing and try to stay as calm and cool as possible. This will not help you if you have TMAU as far as getting rid of the odor. BUT complicating the problem by sweating do to over heating or nerves will only make matters worse. People with odor issues, (my self included until recently) tend to wear a lot of clothes even in warm weather because they feel safer when totally “enclosed” but it is a false sense of security. Trust me the smell will only increase if you are hot or nervous and the extra layers wont keep it in.
3. It’s been suggested that increasing your greens (particularly parsley) may help control the odor.
4. You can try different soaps, shampoos, deodorants, cologne/perfumes etc. However my advice to you is if you’ve tried several types and none work for more than half an hour pick one that’s cheap and stick with it. Chances are once you’ve tried several that all you will do by continuing that experimentation is ruin what little bank account you probably have and stack up your credit card bills. Perfumes, deodorants and assorted other scented products don’t normally react normally to people with body odor disorders. You can still use them and I’m strongly suggesting that you do use them but as they’ll probably only buy you a few minutes or an hour here and there and you’ll probably be applying them to your body so much that you’ll run out fast you might want to use whatever is cheapest and not go experimentation crazy.

What if I live/work/ go to school with someone that smells bad but I’m fairly certain that they have good hygiene habits?

That situation should be handled with extreme care. People with body odor issues who know that it isn’t their fault and who are spending so much time in the tub that they are probably starting to FEEL like a fish on top of smelling like fish are often scared to death of bothering people, highly embarrassed, easily depressed and occasionally borderline suicidal.

These are only personal suggestions. There are no formal guidelines I can give you but these are generally probably good rules to live by.

1. Don’t leave personal hygiene products for them in their workspace.
2. Don’t walk up to them and say “do you smell something?”, wrinkle your nose or ask them if they know what deodorant is or if they use it.
3. Don’t talk about them behind their back, point, stare, giggle or let them see you in any way disrespecting them.
4. DEFINITELY do not throw personal hygiene products at them.
5. DEFINITELY do not try to get them expelled from the school or the work place. (by either talking to your supervisor/school principal OR circulating a petition)

What you CAN do is e-mail them or write them a note. This can be typed up anonymously however I don’t suggest it. It got my share of anonymous notes and I would have much preferred to KNOW who was sending them as to be looking over my shoulder and wondering about everyone all the time. However all my notes were negative in nature. An encouraging anonymous note may not have been as bad.

In your note you can refer them to this article or other articles you might have found on the subject and tell them you understand that they are not doing it intentionally. They may or may not know what they have and a non-direct, non-confrontational word of encouragement might make them feel better. Also giving them a reference point might help them get properly diagnosed and control it slightly better.

You can also be a good family member/co-worker/schoolmate/friend by covering for them once they know you are aware of their situation. In other words if they are frequently running to the bathroom to “freshen up” tell whoever asks that they are busy, not there, not feeling well etc. There is no need to advertise their condition to people who have been fortunate enough not to notice it.

With a place to start, a person they can trust and a bit more self-confidence they may ultimately get diagnosed and possibly find at least a temporary treatment that will make their work day and yours a bit easier to handle.

Where else can I go to get diagnosed, get more information or talk to others that understand me/my friend?

Well you may start by e-mailing me at [email protected] and stating that you saw this article etc. I can then tell you everything and everyone I know in detail that can help you.

But for a quick start you can try:

Information and assistance:
http://www.geocities.com/emporia962000/classic_blue.html
http://groups.msn.com/BodyOdorSupport

Technical aspects and other references:
http://www.sciencenews.org/sn_arc99/5_15_99/bob2.htm

I have found those sites to be quite useful.

I hope that this article has shed some light on this very avoided and very important subject. If we increase awareness and acceptance perhaps things will get better.

7/3/2003