Italian Body Odor forum

Italian Body Odor Froum

This seems to be a body odor forum based in Italy. Ciao ai nostri fratelli e sorelle Italiane. Siamo tutti insieme!

Italian Body Odor forum

Yorkshire Post TMAU article

Nigel Manning : some estimate that there could be up to three per cent of the population with some form of the condition

A regional English newspaper, The Yorkshire Post, has published an article about trimethylaminuria based around Gary, who appeared on the BBC 'One Show' about his TMAU , and has done an article with 'Chat Magazine' as well. Gary lives in the Yorkshire area, and Sheffield Children's Hospital is also in the county, which is where Nigel Manning (Principal Clinical Scientist, Dept. Clinical Chemistry, Sheffield Children's Hospital) tests for TMAU and is the only known clinical TMAU phenotype tester in the UK  

Yorkshire Post article about trimethylaminuria (TMAU) 29 July 2010  

Along with Gary's story,  Nigel also elaborates on views about TMAU, such as some estimate perhaps 3% of the population could be affected to some degree. The article also says a 'large proportion of the population cannot smell it (trimethylamine)'. While this anosmia may or may not be correct, it does seem that some of the population seem to have difficulty smelling sufferers when they are smelling, particularly 'loved ones'.

Poll : Trimethylaminuria : Where did you do the TMAU urine test ?

Where did you test for TMAU urine test ?

Establishment of Rare and Neglected Diseases Caucus : Should include TMAU

The recent NORD newsletter has mentioned that Congress is setting up a Rare and Neglected Diseases Caucus, which will examine all aspects of how government can help rare and neglected diseases. NORD encourage those interested to contact their Representatives to ask them to join the caucus. Unfortunately TMAU may be possibly viewed as one of the least important rare/neglected disease, due to the lack of awareness and perception of the problem, so perhaps this could be one way of persuading politicians how it ruins lives.

NORD article on Rare and Neglected Diseases Caucus

Full Committee Hearing - Treating Rare and Neglected Pediatric Diseases: Promoting the Development of New Treatments and Cures

Dray's TMAU Class for Beginners (TMAU 101)

This is the beginning of Dray’s scent training for TMAU-specific work, using a cotton ball with a TMA-rich urine sample on it. Cotton holds and absorbs scent better than anything else. Up to now, Dray has been trained for other scents to develop the desired alert behavior; and now, it is geared to TMA specific training, and eventually, other body odor-related scents. The TMA sample was donated by a university lab that handles TMA-rich urine samples, and they asked MeBO to not disclose their identity as they wish to remain anonymous.

TMAU SALIVA and/or SWEAT SAMPLES NEEDED
From symptomatic volunteers who have
TESTED POSITIVE FOR TMAU

In order for Dray to have a well-rounded concept of TMA scent, Liz is asking for volunteers who have tested positive for TMAU and are certain that their saliva and/or sweat (collected in separate containers) would have TMA on it, by drenching a cotton swab with saliva or sweat and placing it in a zip lock bag and inserting it in a plastic container like the one Liz is working with in this video, covering it tightly with its proper seal. You can purchase these cheaply at your local grocery store. It would be greatly appreciated if you would then mail it to the following address:

Pawsibilities Unleashed
Pet Therapy of Kentucky, Inc.
P.O. Box 5316
Frankfort, KY 40602

Click here for more information on TMAU Service Dog Training

We thank Liz and Charlotte for having spent countless hours, days, weeks and months in the development of this TMAU Service Dog Program. To think, WE'VE ONLY JUST BEGUN; THE SKY IS THE LIMIT!

Charlotte has not only adopted Dray, but has also spent a great deal of her time training him under Liz's direction, to be MeBO’s first TMAU Service Dog in an effort to help our community understand TMAU and other types of body odor conditions. Charlotte has frequently traveled a significant distance to Franfort, KY from her hometown for training lessons every week or every other week since our Nashville meetup in March 2010, incurring significant gas and hotel expenses, in addition to having committed to provide for Dray’s food and veterinary care for the rest of his life.

If anyone would like to donate to this cause to help Liz and Charlotte with the expenses they incur for our TMAU Service Dog Program, you may use the Donate button to do so. You support is greatly appreciated.

TMAU Service Dog

Liz is a former U.S. Air Force K-9 unit trainer, including search & rescue (SAR), cadaver detection, drug detection, and K-9 obedience. She has also trained Malamutes as sled dogs, shown on the AKC circuit, been an AKC judge, and has volunteered with her own dogs in multiple SAR missions...

Liz Norris is the founder of Pawsibilities Unleashed, a 501(c)3 non-profit organization. She is an official tester for the Therapy Dog certifications and Canine Good Citizen (CGC) tests and Service Dog Public Access Test.
http://puptky.giving.officelive.com/aboutus.aspx

TMAU SERVICE DOG PROGRAM BLOG
Click on picture

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María de la Torre
Director

New York based TMAU Support Group on meetup.com

Recently bodyodorsupport.com poster 'missfizi' has been organizing TMAU meetups in New York that have been well received. Now she has taken the step of starting a Trimethylaminuria (TMAU) Support Group on meetup.com with meetups being based around New York, usually on Sundays.

Not much is known about meetup.com, though it looks to be free to use. It looks to be a group social network site. A few from the body odor/halitosis community have joined meetup.com before in it's old format, but the new format looks much easier to navigate and connect. Perhaps others would like to try starting meetup.com groups for their cities.

Lady with TMAU on UK morning TV programme

Claire appeared on the popular mid-morning UK TV lifestyle programme 'This Morning' on Tuesday 20th July, to talk about her trimethylaminuria. The subject was handled very sensitively and will lead to further awareness of TMAU. Claire made sure they understood that 'fish body odor' was not a correct description in her case, and used the terms 'pooey' and 'garbage' to describe her smells, which is a brave admission and one many of us can more relate to. Thank you to Claire for courageously appearing on TV. Amazingly, This is the 3rd person to talk about their TMAU on UK TV this year. We all benefit from their bravery and the taboo about the subject is becoming weaker, as well as hopefully raising awareness amongst the medical system. The influential effect of appearing in the media cannot be underestimated. Thanks to you all.

The video is on the 'This Morning' website but not viewable to those outside the UK, so a copy has been put on youtube.

Claire regularly posts on the tmau.org.uk forum, which again played a pivotal role in making an appearance possible. Our thanks again to the site owner, Big Vern, for all he is doing for the community.

Freaks and Geeks, A boy with TMAU, Episode 8

Many thanks to the producers, directors, and actors
of this episode for helping
raise social awareness of Body Odor conditions.

Young and older persons with this condition may first need to treat the paralyzing depression and anxiety that frequently prevents an affected individual from coping as well as Gordon does in this episode to then be free enough to learn the positive social techniques he applies to his every day living.

I love this video, episode 8 of Freaks and Geeks, a boy with TMAU. With proper guidance and therapy, we can learn from children who tend to accept their odor condition much better than adults. It's when we turn into young adults that we add so much emotional weight to it, but these emotions can be overcome and managed.

What I love most about this video is how Gordon copes with the whole process. Basically, Gordon goes about his business of living AS IF HE DIDN'T HAVE ODOR though he is fully cognizant of having it, and it shows when the girl he sits next to seems to be offended by his odor and gets up and changes seats with a nasty and disgusted look on her face. Yet, when the teacher announces to Sam that his lab partner will be Gordon (who has TMAU), Gordon seems to reach out to Sam by smiling and waving in a friendly manner and calling him over to sit by him. Sam is actually quite rude in his reply, and Gordon seems hurt by it.

Being open minded, Gordon knows why Sam rejects him, though he realizes it's not all clear cut black and white, as shown later in the episode.

Gordon seeks to keep on living perceiving the multiple dimensions of his social life not only his odor. With this approach, someone nice like Sam would also see the real person behind the odor.

When they are studying in Sam's room, Gordon points out to Sam that he understands the reason Sam didn’t want to study with him - and points out that Sam would rather study with Cindy because he likes Cindy. He then proceeds to establish a good friendship with Sam by talking about how to establish a good relationship with Cindy. In other words, he overcame the natural boundaries the odor created by being ‘real’ and being a good friend. Eventually, Sam is sitting on the same bed face-to-face with him at close range listening intently, as if the odor was non-existent.

PEOPLE DO ACCLIMATE TO ODOR, MAKING IT MORE TOLERABLE,AND EVEN UNNOTICED ONCE EMOTIONALLY INVOLVED IN A RELATIONSHIP WITH A SUFFERER.

I know this is possible because I have observed in the 4 main meetups I've attended how some sufferers tend to cautiously approach their social life in a similar manner. My own son approached his problem in a similarly to Gordon's most of his life, but more significantly from his high school Freshman year (when his intense odor kicked in) through his BA in college (when he controlled it with the TMAU protocol), and he's managed to maintain his friendships throughout that time to the present.

There is life beyond one’s odor, and there are many more reasons (other than or in addition to the odor) for people behaving as they do. Not everything in life is solely related to odor. Deep down inside, Gordon and Sam know that it was due to both reasons, Cindy and the odor, but Gordon chooses to discuss Cindy as the culprit in an effort to establish a friendship and look beyond his odor. That is an excellent way of socially coping with one’s odor condition. As most sufferers do, Gordon understands and empathizes with others for having difficulty coping with his odor, but LIFE GOES ON, and he strives to live it.

Gordon seeks to keep on living a full life by perceiving the multiple dimensions of his social life and not only his odor.

With this approach, eventually, someone nice like Sam would hopefully also see the real person behind the odor. If Gordon had never taken this approach to his social life, he would never have found a friendship as he did with Sam. Eventually, Sam tells his other two friends that Gordon is “really cool”.

This is what psychotherapy should be all about when a sufferer seeks mental health therapy – HOW TO COPE WITH THE ODOR in order to become as social as possible, and how to learn to look beyond the odor and to help others look beyond the odor as well in order to live life as fully as possible. Gordon seems to have it down to a science.

ORS type of therapy does NOT address the real issue of how to cope with one’s reality. If indeed one’s odor isn’t intense enough for most in society to detect it (only some do), then eventually as the sufferer becomes more sociable, the 'odor issue' will eventually take second place and practically dissolve on its own through the socialization process. However, one must first need to treat the paralyzing depression and anxiety that frequently prevents an affected individual to cope as well as Gordon does in this episode.

As he tries to help his new friend with deodorant as a solution, Sam is beating around the bush trying to talk about smells referring to Cindy smelling “great, must be the shampoo or deodorant or somethin”. Then musters up some courage and more directly bring up the subject to Gordon by asking, “What kind of deodorant do you use?”, Gordon turns to him and just brings up the topic about his odor and TMAU, saying, “I know I smell, Sam…” as if he has already come to terms with it.

...how can we expect society to cope with our odor unless we learn to cope with it ourselves?

Sam then seems to panic and become overwhelmed with this, AS MOST FAMILY AND FRIENDS DO, and acts as if he has no clue about what Gordon is talking about, HAHAHA!!! Odor is such an emotional / social issue!!! So, how can we expect society to cope with our odor unless we learn to cope with it ourselves?

I sometimes wonder if family and friends tend to acclimate very quickly in part due to their psychological need to do so because they can't bear the thought of a loved one having this condition. Perhaps, eventually, they become convinced that the odor just doesn't exist!

Eventually, Sam invites him to the movies, Gordon seems happy about it, says, “OK, I’ll try to not stink up the joint…Just kidding” and they both laugh.

It is up to the sufferer to first cope with his or her odor, so that others in society can learn from the sufferer! Gordon shows us how to do this.

Perhaps we can learn from children???

Young and older persons with this condition may first need to treat the paralyzing depression and anxiety that frequently prevents an affected individual from coping as well as Gordon does in this episode to then be free enough to learn the positive social techniques Gordon applies to his every day living.

We must unite, fund raise, seek grants, promote social awareness and pursue research for treatment and a cure. We owe it to ourselves and to our children!

Gordon seems resigned to having this problem, but feels there's hope for a cure in the future. This is where we come in as a community of sufferers. WE MUST UNITE, FUND RAISE, SEEK GRANTS, PROMOTE SOCIAL AWARENESS AND PURSUE RESEARCH FOR TREATMENT AND A CURE. We owe it to ourselves and to our children!

María de la Torre
President and Chief Executive Officer

www.meboresearch.org
maria.delatorre@meboresearch.org

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Annual UK Meetup 2010 - coincides with Thames Festival

Invitation to annual UK Meetup
that coincides with the Thames Festival

DATE: 11th & 12th of September
TIME: 12 noon each day

WHERE: The Tattershall Castle

http://www.thetattershallcastle.co.uk/

A boat moored along the Victoria Embankment, located 100 meters from Embankment Tube Station (metro/subway)

FEATURING: We will take part in the festivities which include a Carnival, live music, international food stalls, firework displays, and a river cruise.

CONTACTS: Meetup Liaison (Snoopy) on Snoopy3932@yahoo.com and copy me into the mail ArunNagrath@yahoo.co.uk

I will have my mobile phone with me and the number is 07753 492 759. If the festival music is too loud to hear the phone, be sure to text me as well guys. I will check my phone every few minutes.

Hello to 'This Morning' viewers

Update : The video is now on the This Morning website in the link below

http://www.itv.com/lifestyle/thismorning/healthandwellbeing/fishodoursyndrome/

Hello and welcome to 'This Morning' viewers searching for information on Trimethylaminuria (TMAU), previously known as 'fish body odor syndrome' As a community, we would like to thank Big Vern from Cumbria as a instrumental role player in helping get the person who appeared on 'This Morning'. He did so via his UK-orientated online TMAU support group tmau.org.uk . Thanks Big Vern for working diligently for our community.

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This blog is part of MeBO Research's campaign to raise awareness and instigate research into systemic body odors and systemic-caused halitosis, which could be quite a common form of body odor/halitosis neglected by the medical system. Currently TMAU is the only form recognised by the medical system (if you can find a Dr who has heard of it!), and dimethylglycinuria is mentioned in pubmed as another type of systemic body odor, but only one case has ever been found. It's possible that 'bowel-smell body odor syndrome', which seems the most common type on the forums, has not yet been properly defined, though some feel TMAU can cause bowel smells.

This post is intended to give you a few pointers to the online body odor community and links to the general information currently available on TMAU.

MeBO Research aims to become a pro-active research funder and patient advocacy group about systemic body odors and halitosis. A long-term goal is the founding of an international Body Odor and Halitosis research center and clinic. MeBO is currently filing for charity status in the USA.

Forums:
The person who appeared on 'This Morning' did so via the UK-orientated online TMAU support group tmau.org.uk, run by Big Vern from Cumbria

Bodyodorsupport.com is 'body odor central' online, owned and run by Arun Nagrath, who often organizes UK meetups.

The Yahoo TMAU group has for quite a few years been the natural online group for TMAU discussion in particular.

You can see other body odor/halitosis forums in our list in the sidebar.

TMAU reference links :
Most of the best TMAU reference links we know of are kept on the MeBO Research TMAU page

TMAU Testing :
In the UK, most Drs will not have heard of TMAU, or dismiss it as too rare to be likely. If you want to be tested on the NHS, it's likely you will have to convince your Dr. You could do this by sending them information on TMAU before your appointment, or take info with you. Also, the only clinical TMAU tester in the UK, Nigel Manning, has kindly offered to email your GP to tell him about TMAU. Many people also prefer to get referred to Dr Robin Lachmann in London, who runs an adult metabolism unit. If you cannot get tested on the NHS and would prefer to pay direct, you could try asking for the TMAU test via Emed (£175 ?)) or Mullhaven (£193 ?). More details are available in the MeBO Research TMAU test list.

There is also more info on international TMAU testing in the MeBO Research TMAU Test list

Welcome to the group. You are not alone. Hopefully we can all help each other to get systemic body odor recognised as a problem by the medical system and encourage research that is much needed. Do not be afraid to ask for clarification, help, advice or to express yourself in the various outlets for the body odor community online.

Some youtube videos on TMAU :
Help I smell of Fish part 1
Primetime TMAU
TMAU case on One Show
TMAU case on Embarrassing Bodies

Article about TMAU on This Morning website

TMAU case on UK TV this Tuesday

Someone has bravely volunteered to go on the UK ITV channel 'This Morning' show, and they have mentioned on the tmau.org.uk forum that they will appear on the show this Tuesday (tomorrow).

'This Morning' is a popular mid-morning daily show on one of the major UK channels. It should result in new visitors to the body odor websites over the next few days. This takes TMAU awareness to another stage on the road to acceptance.

We will try and get a video copy of the interview, but hopefully it will appear 'officially' on the 'This Morning health webpage'

Thanks again to the brave volunteer and to the lady who wrote to the programme in the first place.

Update : The 'This Morning' website is now saying the 'Fish odour syndrome' item will be between 11.30 - 11.45

HBRI accepting samples for TMAU DNA testing again

We have been informed that HBRI is accepting samples for TMAU DNA testing again. Presumably the cost is still around $400 and no insurance is accepted. HBRI has a long history of TMAU testing. The Institute was founded and is run by Dr John Cashman, who has a long history in FMO3 research. He kindly allows people to TMAU test directly since he understands the difficulties people will have in getting access to the test through the medical system. HBRI also performs the urine TMAU test for around $400. HBRI is based in San Diego. TMAU DNA testing had been suspended at HBRI for a while due to lack of funding.

Trimethylaminuria testing at HBRI

MeBO Research is compiling a list of known TMAU test labs. If you know of any others, we would be happy to add them.
MeBO Research list of known TMAU test labs

UK : ITV This morning Show looking for TMAU volunteer

tmau.org.uk has posted on their website that popular UK daytime TV programme 'This Morning' are looking for a TMAU person to appear on the show. They will be asked about their TMAU and treated sensitively. They would prefer a female volunteer.

The full information and contact details can be found on the tmau.org.uk forum:

tmau.org.uk information about ITV This Morning request for TMAU volunteer

NORD TMAU Fund is on the final stretch - ALMOST THERE!

The NORD TMAU Fund, which will be used to ask researchers to submit preliminary on research on TMAU proposals, is now approaching the final stretch. $35,000 is needed to activate the fund. Only $10,000 more to go, just around the corner if everyone pitches in a little more. WE'RE ALMOST THERE!

The total now stands at :

$25,981

To read more about the 'dollar a day in May' campaign and latest on fundraising, see the rrr-tmau.org website

DRAY ALERTS TWO DIFFERENT SOURCES OF SCENT

VALLIE AND DRAY AT WORK
(AND PLAY) IN SCHOOL

Dray takes the initiative to alert two people who are each emitting a 'high' diabetic scent in the same room, which is the scent they are working with to train both dogs during this particular session. The scent could be very easily substituted for any other scent, and the learned behavior to alert would immediately be applied to the new scent introduced.

This is how a dog can be used for search and rescue, he's just given the new scent of an individual, and asked to find it. The behavior is already learned.

It's important to keep in mind that even though a Service Dog can detect a scent, most human olfactory systems may not detect it. This gives the sufferer a window of opportunity to have control over the situation, to make the necessary decisions, and take measures to control the odor to avoid embarrassing social situation.

A Service Dog's olfactory system can answer so many questions. He could help us classify the various odor types to begin with.

DRAY AND VALLIE'S LAST SESSION BEFORE RECESS

TMAU SERVICE DOG PROGRAM BLOG
Click on picture

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MeBO Research

'What's wrong with me ?" : Apply for new UK TV show

A TV company in the UK is looking for people suffering from 'mystery health conditions'. Maverick Television; who make the popular programme 'Embarrassing Bodies' which featured a TMAU case recently, are looking for unsolved health cases that they plan to be film being diagnosed and treated etc. The person will get "free consultation, advice and treatment from some of the UK's leading medical specialists". This may be an opportunity for anyone who is brave enough to appear on TV with an undiagnosed body odor or halitosis problem.

Anyone wishing to apply has until 31st August to email the producers

whats-wrong-with-me

comment from pediatrician about TMAU

A comment was posted yesterday in our post on the TMAU story in Chat Magazine, purporting to be from a pediatrician, Dr Laura P. Shulman. We cannot confirm if it is genuine, but the advice is a good general rule for people who feel they have systemic body odor. That being: an ordinary Dr is likely to not know anything about TMAU, but there is probably a better chance a pediatrician will be interested in investigating it, since they are trained to look for inborn errors of metabolism in very young children. Even though secondary TMAU is the non-genetic type, it is natural that someone with an interest in genetic TMAU will also become familiar with the secondary type.

It's so unfortunate that this poor man suffered from not only his socially crippling condition, but also the all-too-common indifference of the physician to his complaints. Instead of pricking up his ears, or, better, his nose (!) to the patient's description of his problem, the doctor in question poo-poo'd it. Ironically, if he'd gone to a pediatrician instead of an adult or family doctor he would have had his diagnosis straight away. Inborn errors of metabolism are something we're bred to detect!
Laura P. Schulman, MD, MA, FAAP

Sadly even TMAU may not be on the radar of most pediatricians, but it would seem they could be more interested. Nowadays there are often Adult Metabolism Units as well, such as the one run by Dr Robin Lachmann in London. However, even in a typical AMU, there is a good chance they will be unaware of TMAU. This is why most people at the moment prefer to miss out society's medical system and just test direct instead.

Hopefully, over time, the community can make all pediatric units and adult metabolism units (or similar) aware of TMAU, so that sufferers in the future do not have to go through the lack of a diagnosis and dismissiveness of today, where people can go undiagnosed perhaps for decades.

Transdermal sensors : in theory could monitor body odors

Lindsay Lohan has just been jailed for breaching her probation in alcohol related cases. It was interesting to read that part of her probation involved wearing a transdermal sensor that can detect alcohol vapors from the skin. The sensor was tagged to her leg. Such a transdermal detector (SCRAM bracelet/anklet) is shown in the link below :

http://www.alcoholmonitoring.com/index

This shows the possibilities for detecting body odors in the future through transdermal detectors. Unfortunately no-one is likely to manufacture one soon, but at least we know the technology seems already possible. Of the ways to monitor body odors, this would likely be one of the best options in an ideal world.

tmau.org.uk interview with Nigel Manning: TMAU tester in the UK

tmau.org.uk have conducted an in-depth interview with Nigel Manning, the only clinical TMAU tester in the UK. Nigel is the Principal Clinical Scientist, Dept. Clinical Chemistry, Sheffield Children's Hospital. Nigel has already offered to help arrange testing for those who wish to test by writing to your doctor. He can also arrange testing through him for overseas readers as well.

tmau.org.uk interview with Nigel Manning : UK TMAU tester

Nigel is very sympathetic towards the body odor community, and has previously kindly given the blog an interview, as well as giving us an informative PDF about his testing procedure and results at his lab. He also allows those thinking of testing to contact him, as well as allowing people to ask for advice on their results

meboresearch interview with Nigel Manning, UK TMAU tester

Nigel Manning TMAU PDF document given to meboresearch

Nigel Manning email address : Nigel.Manning@sch.nhs.uk

Our TMAU Service Dog's Progress in videos

It is with great pleasure that I introduce our TMAU Service Dog, Dray in action performing scent alert work, with his volunteer handler, Charlotte, and his Master Trainer, Liz Norris. You are welcome to visit our new TMAU Service Dog Blog, in which we are documenting Dray’s progress, as well as any other future Service Dog we may acquire to help us in our efforts to identify and control the various body odor conditions. I hope you will enjoy the numerous videos Charlotte and Liz have taken for us so that we may witness Dray’s development. The Service Dog puppy, Vallie, who attended our Nashville meet-up in March 2010 is also in a few of these videos, as she’s being trained to be a Diabetic Alert Service Dog. When you visit this blog that has 36 posts, I recommend that you read at least the first 4 or 5 of them so that you can get a good feeling of the progress taking place.

...he may also help us discover odors that may not have yet been identified and classified as Dray follows the command to ‘find another’ of the same scent.

I’m happy to say that Dray has made great strides not only in alerting for various previously identified scents, but he may also help us discover odors that may not have yet been identified and classified as Dray follows the command to ‘find another’ of the same scent. Liz clearly explains in one of the videos how this can potentially help us isolate, study, identify and classify our various odor types with the help of a Service Dog to then better assist scientists design more on target research endeavors.

Dray and other trained Service Dogs can also help a sufferer determine how much time he or she has between the dog’s detection/alerting and when humans begin to detect the odor. Keeping in mind that some humans will detect odor much sooner than other humans, while others may never detect it at all, it will be wonderful to be able to document this phenomena, probably for the first time ever. Thankfully, this will help sufferers learn to manage an odor flare-up with greater control, as this window of opportunity is better identified by an SD, helping us understand it, and to explore and develop management techniques in an effort to help the sufferer avoid embarrassing situations.

Click here for more TMAU dog training videos!

María de la Torre, Director


MEBO Research

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