Raising Awareness

Lorelei

Being that I’m in the medical field, I run into a lot of people who are isolated and in need of services like professional cuddling to avoid the judgement they receive from the general public.

I would like to raise awareness about a specific condition today, known as TMAU:

“Trimethylaminuria, commonly known as fish-odor syndrome, is a rare condition impacting a sufferer’s ability to break down a pungently scented chemical compound, naturally occurring in the body, called trimethylamine. Those who have TMAU are plagued by extreme body odor: Their urine, breath, and sweat are laced with a thick scent akin to that of rotting eggs, garbage, or stale fish, and it's completely impossible to control with bathing, deodorant, or other forms of personal hygiene.

Some sufferers are born with the genetic mutation that causes TMAU, but others acquire it in adulthood (hormonal changes or chronic illness are two possible triggers). But not everyone can smell the TMAU scent, and most of those who suffer from it are unable to detect it themselves – one British woman recently described desperately searching her house for a dead animal carcass because she couldn’t believe she was the source of the offensive odor described by her friends.

Science of Us recently spoke with a 38-year-old woman from Savannah, Georgia, who suffers from TMAU.

Tell me about your condition.
I have type-two TMAU, the acquired type, which means I developed it later in life. It’s a metabolic disorder that prevents your body from converting trimethylamine into another non-odorous compound. It means you have extreme body odor. It’s an embarrassing, lonely condition.

How strong is the smell?
I have a very strong, fishy vaginal odor and an ammonia-like odor that comes out of my armpits and groin. My breath varies between eggs and garbage. If I get really upset I get a skunky smell.

Can most people you meet smell it? Can your family and friends?
My husband can’t smell it and has never been able to. The first time I smelled the odor, and I asked him if he could, too, he thought I was joking, seriously, because he couldn't smell anything.

For the most part, my kids cannot, but there’s been a few times where they’ve said something about my breath. Kids are so honest. But you become paranoid, and you go to your family members to ask if they smell anything on you, because you want the truth. That’s where I think even if family members can smell it they don’t want to hurt you, so they don’t tell you. But it’s frustrating because at the same time you want validation that the condition exists. I saw therapists who told me I have body dysmorphic disorder and prescribed me several strong antipsychotic drugs to help me with my "psychosis." They told me I had a mental problem. That really made me question my sanity. I’d think, Maybe I don’t smell? Maybe I am just crazy? And then someone reacts negatively to you, and you think, Surely not.

So you can’t smell it yourself?
No. For the most part if you have this condition you’re completely unaware that you’re emitting any kind of scent, your nose is so accustomed to it. You can’t smell your own smell. But I have a very sensitive nose, which is why it’s so confusing that I can’t even detect my own odor. I love perfume. I love the smell of baking. I love the smell of babies.

When did you first develop it?
I remember that during puberty I had to take extra measures to stay fresh. I didn’t know what was going on, and I guess I just thought, Well, I’m going through puberty ... I applied deodorant frequently, and I had to change my clothes, but I wasn’t getting a lot of hints from other people … Still, I could tell that something just wasn’t right.

I figured was just a very sweaty person. My grandfather sweats a lot, too, so I just thought it was genetic. It really didn’t inhibit me: I dated, I had friends, and I went to prom. I got married to my husband, whom I met when I was 19, and I went college for a few years. It wasn’t until 2000 when I was pregnant with my first child that the condition kicked in. The hormonal change was a catalyst for me. But, still, because I couldn’t smell it I didn’t know it was happening.

How’d you find out?
We had difficulties with the birth of my son, and while I was in the hospital I met a lady who had a similar pregnancy experience. We bonded and became good friends. Then when the babies were about a year old, the weirdest thing happened. She started giving me little hints in conversation. One day I complimented her on the perfume she was wearing, and she said: “It’s not perfume, I just took a bath and used soap and water,” as if I had never heard of such things. The climax came when both our families went out for dinner and her husband told a crude joke involving a woman who had really bad smell, downstairs, you know in “that” department. After he told the joke he laughed and said directly to me, “Well, there’s a joke you can appreciate.”

Nobody had said anything up to that point?
Body odor is such a taboo subject — I don’t think anyone really feels comfortable going up to someone and saying, “Hey, man — you need a bath!” After that incident I noticed that my friends would drop similar hints or avoid getting close to me. When we were having a conversation they’d get this glazed-over look, or they would back off or put their hand over their mouth. Then I noticed, when I was out shopping, store assistants would say rude things very loudly because they wanted to let me know I had a problem. Things like, “Oh, here comes that woman! Don’t let her come down my line.” I’d hear words like monkey or skunk as I walked past with my cart. I just said I was so sorry, I felt bad, they thought I was going in there without bathing or brushing my teeth, but the truth was I had this odor I could not get rid of.

That’s terrible.
I’ve had baggers just walk off midway through serving me. One of them looked up, and she said, “I’m not bagging this,” and she just walked away. Once I went to get video games for my kids at a store, and when I walked past a teenage boy who was working, he reached down behind the counter and took out air freshener and sprayed it behind my back and said to his colleague, “Check this out! Now I can breathe.” It was horrible. I went home and cried.

Lorelei

Part 2:

“Do you constantly monitor people’s reactions or avoid certain situations?
Oh, yeah! I’d go into most social situations dreading it because you just know what’s going to happen. You’re looking around for coughing, sneezing, rubbing the eyes. It makes you very paranoid. If someone whispers something to someone else I think they were talking about me.

Are there any specific situations you avoid?
Simple things like getting a haircut or having my nails done. I used to just let my hair grow until it got to a point where I had to go to a beauty salon, and I’d avoid going to the same place more than once because I had a few incidents where they were nice to me the first time and then when I went back they’d look at their co-workers and say, “Oh no … we don’t have an opening.” I always try and do self-checkout at the grocery store because sometimes I’m just too scared to go down the regular line.

I hate to go to the movies or restaurants because you’re in close quarters with other people. There’s a Mexican restaurant I go to regularly, and every time I go in there the owner gets this look on his face like he’s seen a ghost. But this confidence has come with time and age. When I was younger it was so traumatic. I’m lucky I handled it without harming myself. A lot of sufferers think about suicide every day. They can’t see any hope, and then there are people who do the diet and find that while it may not eliminate the odor, it helps. The saddest part about it is that you isolate yourself. I feel bad because I understand: It’s human nature to want to avoid bad smells.

When were you formally diagnosed?
In 2007 I was researching my condition on the internet when I came across a support group run by someone in the U.K. who has TMAU. I discovered an entire anonymous network and a name for my condition. I think that community slowly pulled me out of the depression and encouraged me to go and get tested, which I finally did about a year ago. When I got the test results I started looking around for information and discovered that it’s really impacted by your diet, but there was hardly any information out there. So I started coming up with simple recipes with carefully controlled choline content. I thought, This is easy, because I love to cook and I’m a housewife. I stay at home with my kids, so I had the time to devote to that.

I waited from 2007 to 2013 to actually bite the bullet and take the test. There’s a lot more research being done in the U.K. than there is here in the USA. There’s a clinic in Cleveland where the tests are conducted. I went through MEBO (a patient advocacy group for systemic body odor and halitosis), and they collected a batch of tests for me. They then send out frozen urine samples to the clinic. It takes about a month to hear back, and when I got the results … well, honestly, I was afraid to look at the results. I had mixed emotions, but when I saw that I had TMAU I just cried and cried. I felt validation for all that I had been through. I wanted to pick up the phone and call everybody and say, "See, this is why I smell bad. This is why I've been mistreated, this is a real condition, and it’s called trimethylaminuria!" It was liberating. It was also sad that I did have a name for the odor problem and that, yes, I really smell that bad. I always thought, Well, I smell sweaty, that's all … But with this diagnosis I realized why people reacted to me the way they did. I started the diet and noticed a huge change in my interactions with others. I found that I could control my odor through the diet. I gained my self-confidence and my life back! So getting tested was the best thing I ever did. I only wish I had done it sooner.

What can you eat, and what can’t you eat? How easy is it to keep to the diet?
It’s easier to say what you can’t eat. You avoid red meat, pork, eggs, nuts, and soy. Processed and packaged foods all contain soy, so you have to prepare all your own meals from scratch. Some of us can tolerate almond milk, and most can tolerate white bread and white flour, so we can make pancakes and waffles. We can do protein, but we tend to stick to chicken and turkey. But you don’t want to eat too much in one sitting, so you have to weigh all your food, and that’s really annoying.

The thing that we are trying to avoid is choline, but you can’t cut it out of your diet completely because your body needs it. If you simply eat fruits and vegetables and very little protein you’ll get sick. After I went on the diet it took me about three months to get “clean,” and people’s reactions started to change. I could talk to people, I could socialize, I could get up in their face, and I realized that for the last three years I’d been really socially isolated. I decided I wasn’t going to let it control me anymore, and I started throwing myself into my life and enjoying things. But you have to have a lot of self-control, so I eat clean for the most part and then give myself a cheat day. I’ll stick to it for three weeks and then reward myself with dinner, but I know when I do it I’m going to suffer for a couple of days afterward.“

Lorelei

Part 3:

Can you drink alcohol?
Oh no. I mean I can and I do occasionally, but I know it’s going to be a problem. Beer is really bad, and some people can drink wine, but it really impacts me. Just about anything does, but beer is the worst.

Can you describe your daily routine and how it’s affected by the disorder?
It starts from the minute I get up. I shower really well using a product that’s closer to the natural pH level of your skin like acid soaps with a pH close to five, or Neutrogena body wash or Neutrogena Clean and Clear things with salicylic acid. I go over once with soap and then again with body cleanser. It’s tiring, but I know it’s something that I just have to do.

I’ve had some of the worst experiences talking to people when my breath is really bad. They’d call me dragon breath and step back when I was talking. So I use peroxide to gargle and then follow it with alcohol-free mouthwash because alcohol will dry your mouth out and make it worse. And then I put on special creams to dry my skin, and excessive deodorant. I’m always thinking about reapplying it if I get hot. I always carry wet wipes to clean my armpits and groin area. Body sprays tend to mix with the odor on your skin and make it ten times worse, so I don’t use those. If I follow the diet I can use a little perfume on my clothing but not on the skin directly. I don’t work right now, but if I did I’d probably have to come home and shower during the day

How many times a day do you shower?
When the odor is really bad I do it about three or four times each day. You want to be clean, and you don’t know how to get clean, and as soon as you get out of the shower you worry that you smell again. It’s something that makes you feel better psychologically, but it probably hurts more than it helps because it dries your skin out. I think of it as an aura, like a cloud that you can’t get out of.

What’s summer like? Have you ever traveled to a really hot destination?
When my family goes to the beach I really don’t want to go with them. I know it will be really hot, and that brings out the odor. In the past I just wouldn’t do it, and I would tell my husband that I’m not feeling well. He doesn’t seem to understand, even with the diagnosis, because he can’t smell the odor. When you have your period the odor gets worse, really crazy, and that’s the only time I can’t control it even if I’m strictly following the diet. I’ll tell my husband that we should do something where we can sit outside, if I even go out at all. My kids like to go to amusement parks to ride the roller coasters and things like that, but when I stand there with them and it’s hot I’m always really worried that I’m emitting the odor.

How has it impacted your relationship with your husband?
We’ve been married for 18 years, and you want to feel like you can talk to your partner about anything. And while at the beginning he was very understanding, he’s never smelled anything so it just doesn’t exist to him. He thinks I use it as an excuse for not doing something or going somewhere, and that causes a lot of tension. I try to avoid using it as an excuse — instead I’ll say that I feel sick. There was a family wedding, and we were all going to go, and I just couldn’t do it. I had so many bad experiences the week before, and I think I would have had a panic attack right there in the church. So I told him I was sick. Emotionally, I just couldn’t go through with it, so they all went without me.

So you don’t work outside the home?
No, and honestly it’s because I’m afraid. I’m comfortable enough to do things with my friends, take vacation, go to the movies, and take my kids and their friends bowling. But I don’t know if I’d be strong enough to go outside the home and work every day. Strangers will go out of their way to say something and make you feel so bad. You just want it to stop. You want them to treat you like you are human. You feel subhuman. They look at you like you are filth, and you just wish you could be equal. The diet helps, but I think because of my past experiences, the fear is still holding me back. I love working with the elderly, and I want to work in a nursing home, but I know people who do that, and their colleagues are tortured by their smell. I’m very lucky my husband has a good, stable job, but I also wish I wasn’t afraid to work. I hope one day I get to the point where I can.

Does it make you paranoid about how you present or groom yourself?
I was really small when I was younger, but I recently gained weight, and I think that’s made me self-conscious — people think you smell because you’re large. You really worry about how you come across. You want to look good, and you don’t want to feed into the social misconception that if you’re overweight you smell.

People have pity for you if you have a physical disability, but if you have something like this they don’t think there’s any excuse. You aren’t taking care of your body, and you have total disrespect for people around you, and they take that personally.

Is there anything that you wish you could have done and just haven’t done because of this?
Other than working, we don’t go to church regularly, and I would love to do that. I know that sounds silly and simple, but I’ve had some really bad experiences at church, where I was ostracized. I really love the fellowship of other people, and I guess I wish I could be more social. I’m social, but I can’t really attend events or get close to people without having to worry about it. It’s like when you are overweight and you lose the weight and then you look in the mirror and you still see the fat person. It’s kind of like that. It’s really hard to get past it, but you move on. I’m thankful that I’m not totally housebound — it could be so much worse for me.”

—

I find this story heartbreaking. While this woman does still have a life and a family, she has to make a huge effort to deal with a problem she’s not even able to detect, with no cure, and even with all the measures she’s taken, it doesn’t stop her from receiving ridicule and being limited in what she has the courage to do in her life; and while she can afford not to work outside the home, there are many sufferers with these conditions who can not afford that.

Link: http://nymag.com/scienceofus/2014/10/what-its-like-to-have-extremely-awful-body-odor.html

Robert02910

Thank You for sharing this!

UKGuy

Apparently this is a rare condition. Even so, it's good to be aware that it exists, even though we are unlikely ever to come across it.

However, allow me to raise awareness of a far more common problem. That is people who overdose on cologne and perfume completely unaware that many people are seriously allergic to it.

I used to enjoy women wearing perfume and used to wear cologne myself. I was fine with this until a few years ago when I noticed I was getting severe headaches when around anyone wearing perfume. Now I can't even put the tiniest dab of cologne on myself without getting a red rash that lasts for days. I have resorted to using unscented laundry detergent. I am sure it's some particular component of perfume that affects me because some are worse than others. Floral scents seem to affect me the worst.

Lorelei

@UKGuy

It’s true that TMAU itself is rare, I bring it up because it’s one of the most extreme conditions of its kind.

However, Acanthosis Nigricans is very common as there are more than 3 million cases in the US per year and while it does not happen to every person with A.N., the disorder can mimic TMAU by causing some of the same symptoms; odd odors not detectable by the sufferer and not detected by some of the people around them, but detected easily by most strangers... the impression that the sufferer is dirty even though bathing regularly, wearing body spray, wearing deodorant, etc, does not remove or mask the odor.

Also very unfortunate for people with A.N. Is that they get dark “dirt like” patches on their skin; a result of insulin resistance, but people simply assume they do not bath properly / at all. I once knew a teenager with the condition who had been told to shower, did so, and came out with (obviously) the same patches on their skin; their frustrated parent took a scrubbing pad to their skin and scrubbed it raw, exclaiming in frustration “why won’t it come off” neither of them realizing it was just a part of the poor child’s skin.

ubergigglefritz

@UKGuy same here. I get really bad headaches from certain scents.

This is really insightful, thankyou for sharing.

Thank you for sharing information about this. It is good to spread awareness about these types of things so people know how to handle the situation if they encounter it. Better awareness about various things leads to more compassion towards a situation and ultimately toward a better world.