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Denver TMAU Test Lab survey click here
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USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

Monday, November 3, 2008

Camille talks of her Trimethylaminuria on ABC Primetime

Groundbreaking moments in metabolic body odor:

As time goes by we will be able to look back at the milestones in the history of metabolic odors that changed the prospects for sufferers of these conditions that are likely as old as the creation of organisms (An FMO3 expert has said (something like) that despite FMO3 being the most abundant enzyme in the liver, the genetic variation has been highly conserved). For obvious reasons (and medical incompetence ?), this may be the outcast of orphan disorders, despite possibly affecting 1% or more. It wasn't until 1970 there was a first 'diagnosis' of a metabolic body odor (trimethylaminuria).

The path has been very slow, even during the internet age, but at last the problem is beginning to surface although it has a long way to go to getting recognition. There are many brave pioneers in the journey, who perhaps do not realise the impact and respect they will always have from fellow sufferers.

One groundbreaking moment was of course the ABC Primetime interview by Camille and the founder of the TF Foundation about their trimethylaminuria in 2006. The video doesn't exist on the ABC website now (it's still on youtube) but the comments section about that show will always see more sufferers gather to post there (in what is supposed to be a rare disorder, and ABC likely expected to get maybe 1 or 2 comments and the thread to fade after a week).

Thank you ladies, pioneers and warriors in systemic body odor awareness.

Youtube video of the program

quotes from the comments section:

hello my name is linda thank you camille to have help us understand our condition. In my case I left my husband because he also told me it was in my head. I was terribly depressed the only place I felt freer was at the pool but even there couldn't get to close to the public . I spent so much time in sauna's hot tub infra red sauna which I purchase as well as the ion cleanse foot barh everything to chase that smell away.
I went to graduate school with Camille and considered her a good friendand had no idea that she suffered from this condition. It explains alot of her stress during student teaching though. The entire time I knew here I never noticed anything and feel horrible for all the suffering she went through previous to her diagnosis. She is truely a wonderfully intelligent woman that has so much to offer the teaching profession. What she has gone through must have been horrible but I hope she reads this and knows that their are alot of us that know and love her. Stay Strong CamilleBrenda M
I am very comforted knowing I am not alone. I will not tell my own stories because they are similiar to all of yours. I think no one is going to do anything for us. The doctors all seem to not belive or care about this illness...
I also believe that I suffer from this condition. Although my husband says I don't smell, I know I do. There have been several instances where individuals say, "What's that smell?" When I hear this, I know it is me and I just die inside. Like many others with the same condition I also shower, floss and brush my teeth. It just doesn't seem to be enough.There is certainly a connection with regards to the types of foods I eat. I have also noticed that if I feel the slightest bit of anxiety, the smell just magnifies! I feel a rush of heat come over my body because I become embarrassed.I feel an overwhelming sense of relief to associate this condition with a name...FINALLY! To the very brave and beautiful Camille, thank you for sharing your story with the world. You are a gift from God and I thank you from the bottom of my heart. To ABC's Primetime staff, thank you for using your resources to share this story with the public. Hopefully, society will become more educated and those who are fortunate enough to not have this condition can perhaps cut those of us afflicted by this condition a little bit of slack.Lastly, to my fellow TMAU’ers…WE ARE NOT ALONE...UNITED WE STAND!
As I sit here reading everyone's story, tears run down my face because I also suffer from this disorder. I feel sad knowing that others suffer from this because I can relate to all the emotional pain that they are going through. But on the other hand it's comforting to know that I'm not the only one and that others can relate to my situation. In my case, I don't smell like fish, but I've been told (not directly to my face) that I smell like something dead. I'm 40 years old and I used to work for one of the largest financial investment company. This job lasted 2 years but they wanted to get rid of me after a few months due to employees complaining about the "smelly lady". Actually, I should have been the one to complain about them and the way they were treating me. They would spray Oust or Fabreeze directly at me. One employee would throw paper clips in my cubicle to annoy me, while the other would yell out "#### face" behind a cough and at times, this employee would burp out his mean comments just to get a big laugh from the rest of the group. I complained about these employees to HR, but after their investigation, the employees in my dept. they said that I was the problem. This was their way to drive me out. My employer prior to that was with a high tech company. I had a high position there so no one was tempted to be as cruel. However, they would cover their nose during meetings. Even my friends at work did not bother to politely tell me what was wrong. I've suffered from this for 10 yrs now & quite frankly, I'm sure what caused it but I've tried everything to get rid of it. I had my tonsils removed thinking that maybe that was the problem. I also had my gall bladder removed after a series of stomach attacks but neither surgeries helped. I'm a catholic and have faith in God. I pray everyday ever since I was a little girl. I'm married and have two kids and although they are supportive, sometimes I feel like I have no one to turn to.
I, too suffer from this disorder-Have for the past 30yrs, but it was not until 2006 that I was finally diagnosed. Over the years I suffered humiliating comments from students, co-workers and strangers. I ave been called many, many cruel names- I have been shunned by friends and family alike-it makes for a very isolated life. I kept going to doctors but they all told me nothing was wrong with me. It was through the internet that I discovered TMAU and their support group and finally was diagnosed positive for TMAU. The medical profession needs to be educated about this and many other rare disease-or a the very least direct patients to places like NORD that will be better able to answer their questions. Now that I know what I have I spend my time trying to raise awareness and funds that will go to research-it is ONLY through research that we will find a cure for this most devastating disorder.
I owe a HUGE thank you to ABC and to the very brave Camille! I'm 59 and have lived with this since my early twenties. The fecal odor from my mouth is so strong at times people turn away and cough.....and this is from a three foot or more range. I know I have to go home even though my teeth and gums are healthy and I've gone through an exhausing ritual...
OMG! An answer to the problem for this woman. There is a lady in my office who has an offensive odor. In the summer, it is worst! Spraying wouldn't help and had to be discreet. She is already very sensitive and no one in the office had any guts to let her know she has an odor. I may have to print this article and leave it under her door like that other person did. Hopefully, it will help.
I work with a girl that has this disease. The other employees in our office have sprayed her chair with Lysol and complained about the constant rotten fish oder she gives off. I am going to print off the 20/20 story/information and leave it out where she can read it. I hope she finds you.
Thank you Camile for being so strong and telling your story,I am 52 yrs. of age and have been suffering for many yrs. with body odor .I have left or lost jobs due to this condition.Doctors do not want to tackle the issue.People have spay the area after I have left the room or the chair that I sat in.People have made comments that I was dirty and that I smell like trash.Some morning I did want to get out of bed and face the world,not knowing what would be said or done to hurt me.I must work to make ends meet,my suffer with a illness after being on one job for over eighteen years.I have left jobs or lost jobs due to this condition,when I ask my husband can he smell me he always said its all in my mind.I know better when personal items such soap and other items have been left on my desk.I have cried so many times in private.This condition is not just about the odor but pride.I have wash my self so much ,at times that my skin became raw.Thank you so much 20/20 for airing this program it touch my heart and soul and gave me hope.
I am a male, 60 years old and have lived with this problem most of my adult life. When through my life people would say "I smell something," I would say, like everyone else, "It's not me", because like everyone else, you cannot smell yourself. This is on the lighter side, because we need to learn to laugh at ourselves, although I know there is a lot of pain also. This is something not to do: I went on an Atkins Diet and you eat all the foods we should not eat for this condition. The good news was that I lost 30 pounds. The bad news was: I could, for the first time, smell myself! If the phrase "you are what you eat" ever fit a human being, it fits this condition. On my own, after the Atkins diet, I eat very mild foods, oatmeal, no beef, no pork, mainly chicken,and whole grains. This helps my condition, but never gets rid of the problem totally. On the weekends, when I am not working, I enjoy the foods I cannot eat at other times, then I go back to my very mild foods through the week. My wife and I call them "clean" foods. This is Robert from California.
I want to thank you for airing the above program last night(March 7th,2008) I aparently have this condition and have had it for over 40 years. I recently had to leave a job of 7 years because the "Human Resouce" person called me in and stated " We need a doctor note in your file concerning your "constant odor"". I was humliated as she only gave me in reality 6 days to go to a doctor or I would get a warning.I too, like many who have commented have had to wash at work(cannot smell odor) and shower two or three times a day. Apparently customers and employees where compaining about the ''smelly employee". I was loyal for 7 years and this was embarassing and hurt. I had to leave and I did and I have not worked since last September 26th. I have a very supportive husband and wonderful church family. I am very glad that I have condtion that now is being noticed and I hope and pray that there will be some answers soon. Anxiaty, like Tammy D has said makes it worse, but tallking and learning about it really helps. Thank you Camille for being so strong to be able to dicuss this condition and for 20/20 for airing this program again. I am very glad to find out this is a real condition. God bless all of you who have contributed to these comments. It has been very helpful to me. Again thank you ABC 20/20! PB
There is so much more to TMAU than its malodorous symptoms. They are merely ONE aspect of this very complex rare metabolic liver disorder. For additional information about TMAU contact The Trimethylaminuria Foundation (TF) at P.O. Box 3361, Grand Central Station, New York, NY 10163. Phone: (212) 300-4168. E-Mail:;
I'm an so very relieved, having suffered horribly from this condition for over 30 years, I'm always astonished to discover in less than 5 minutes that not only is this a real medical condition, a whole colony of people suffer from it, but there are also ways to alleviate it. I feel lighter! I too have suffered from every humiliting insult imaginable and have hung my head in shame most of my life...
Was so glad to happen to see this program: I work in a dental office and we have been puzzled for years about one of our patient's odor! It is exactly like very bad fish, filling the whole office (not a small place!)Now we can tactfully address the issue and help her. I printed off the information for the dentist to read. Thank you so much for even "going there" about this rare and embarrassing problem: you've helped a lot of people.
My goodness! To hear people recall scenarios like I have experienced is unsettling, however I am comforted, and feel somewhat vindicated. I am comforted in knowing that the symptoms such as the anxiety attacks, I have experienced due to potential interaction ,are being felt by others. My undergraduate academic career has been eclipsed by this odor, and fear of its reoccurance. The odor has surface during the most inopportune of times and has undermined my ability to be taken seriously in a well respected institution. However, in spite of my eclipsed social standing, I feel, in part, vindicated knowing that my fear of small rooms and crowds, are not the markers of insanity and that there is a supportive forum such as this
I just wanted to let you know that your not alone. Both of my daughters, ages 7 and 9 have the same disorder. They were diagnosed at U of M about 6 years ago. I worry for them becuase they can smell pretty bad sometimes and as a mother, I don't want them getting picked on in school.
My Daughter 13 has this. I finally discovered what it was about a year and a half ago after doing research online. Since the age of three i took her to doctor after doctor i was convinced that it was an infection in her urine. doctors had no answers for me, through the years she had become more isolated and school and teachers and counselors would call me wondering if she was bathing and if was washing her clothes. she truelly cannot smell herself which i did not know was common for this until i read these comments. since discovering what this is, we have tried to eliminate eggs from her diet. that has helped control the odor tremendously. she is socially now starting to blossom. I am glad that we were able to find out what this was at such an early age. my heart breaks for the people who have lived with this not knowing or understanding what it is.

Sadly,me too suffer from chronic halitosis,i just learned that my condition is related w/ TMAU,i was cryin upon seeing the video of camille in youtube,i feel her pain and so as everyone here in the forums.This horrible problem has completely ruined my life. Ive seen by different doctors,i had tried different product sold here in net w/ no succeed,ive lost all my savings and now i had quit my job.There were points in my life where I was suicidal,just 3 days ago, i try to escape from this so called-cursed life,I found my self riding in a train w/ no exact place to go and had these bottle of mix chemical i try to make as a poison,I feel like an orphan walking in an empty street askin for Gods guidance to lead me in a right path to take,as i stopped in a corner i decided to drink it all,i had an hour struggling waiting to end my life,but i failed.Another failure,Im tired of fighting these battle... Every single day brought an insurmountable amount of pain, 11 yrs of humilation and insults being a source of this putrid smell that quickly ended conversations, ruined relationships,shatttered dreams and brought forth evil and hating stares.At 26, i know my family think im "weak" for letting this consume my life to this extent. They dismiss my problem as an issue of hygiene, and a source of laziness that brings the issue unknowingly. I try and maintain a happy-go-lucky mood around them, but every single smile and laugh is a mere mask of the true feelings that i keep inside ,unimaginable source of pain.I tried to get used to it and learned to deal with it everyday. As i read each ones story,i feel a sense of kinship of the members who post here for whom I can freely talk about my problem,sharing story .I believe God has plan for us and im starting to see it like that,hope we can really find cure for our problem soon...This forum just makes me feel_so_ good to finally let everything out… To finally unite with this people who understand the same pain and sufferring


Anonymous said... Repost

Feb 28, 2012, 8:14:00 AM
skullrider68 said...

I have to say it takes alot to speak out knowing there are jugdemental people out there i commend you for that camille.

Mar 5, 2012, 6:54:00 AM
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