Systemic Body Odor Blog

News & Views on Systemic Body Odor and Halitosis such as trimethylaminuria TMAU. If you have fecal odors or bowel odors it may be metabolic/systemic

Showing posts with label personal stories. Show all posts
Showing posts with label personal stories. Show all posts

20 February 2017

Youtube : UK lady with TMAU, workmates smell her



A professional UK video production (Barcroft TV).
Only lasts 6 minutes.
UK Lady with diagnosed TMAU.
Her workmates can smell her.
Barcroft TV have done TMAU videos before.

Full TMAU story in Daily Mail

This video was just published on the Barcroft TV youtube channel. My impression was that Barcroft usually did productions for TV and later put them on their youtube, but this one is only 6 minutes long and I have not heard of it on TV. Perhaps it was on TV as part of a mix of health disorders.



Barcroft TV has a history of TMAU stories for TV. Examples :
'Help I smell of fish' documentary. (youtube)
2016 video of young London lady for Channel 5 'health-disorder' programme (click for youtube video)

Barcroft
It seems they have 2.5 million youtube subscribers, so any video on there gets a lot of exposure. Barcroft is a small UK production team originally set up to provide TV channels with programs. Perhaps now they are also specialising in short stories for their youtube channel too.
Barcroft story 2016
2014 news article

Comments on this video :

A workmate can smell her.
One workmate says they can smell her. and have had complaints. This is good 'witness' evidence as usually in the videos (or in any platform) no-one reports of smelling them. It shows how for example, a TMAU person may struggle in a workplace. Despite TMAU, she is married and working, though she seems to have picked nightshift to avoid people.

Not aware of  this lady.
I am not aware of this lady on the various TMAU online social hubs (e.g. forums etc). It goes to show that there are more out there we never hear of. Personally I think 'systemic malodor syndrome' could be perhaps 1-4% of any population.

Many thanks for the publicity to the disorder. She joins the TMAU 'Hall of Heroes'.

Current stats (day 2 of the video upload, 20 Feb 2017)
220k views.
Barcroft has 2.6 million subscribers.
5th most read story over last 30 days in Daily Mail Health Section (could go higher).
2nd most read Health Section story in Daily Mail over 7 days (could go higher).
322 Daily Mail comments.
9.4k Daily Mail shares.

Other links :
IBTimes article
   

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4 October 2016

Young Mom TMAU Youtuber

This young American mom has started a youtube channel about TMAU.
Looks like she plans to update the channel quite regular.

Note : This video is an embed from source.
If video is deleted it will auto delete here too.
As TMAU is so taboo, quite often people delete videos in hindsight.

Visit her channel here : click link 




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22 January 2016

5 January 2016

TMAU Youtubers

tmau youtube
Recently there has been an increase in 'TMAU Youtubers', which all sufferers are grateful for as it raises awareness and brings comfort. Metabolic Malodor is a very 'taboo' subject, which is why it is so unknown. TMAU is the only test on offer for the concept of  'metabolic malodor', so many who feel they have a metabolic malodor disorder identify with TMAU. My own belief is that most cases may be more to do with all 'FMO3 substrates' (many sulfides and amines) rather than just trimethylamine, but TMAU is the only test on offer currently.

This is a new TMAU Youtuber. This is an embed of their video. If they delete their videos it will auto-delete here too. You can subscribe to her channel for updates.

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5 December 2015

YouTube : Another young lady talks TMAU



Another young lady has posted a video talking about living with TMAU. This greatly raises awareness, Thanks to all the people who post videos on the subject.

This is an embed of the video. Should the original be deleted this one will auto-delete too.

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23 November 2015

11 August 2015

27 July 2015

Youtube : TMAU vlog by young female activist

A brave young USA lady has begun a vlog on Youtube to raise awareness of TMAU. The youtube username is StankGirlDiaries. So far 2 videos have been posted, which are valuable insights as to how TMAU  has a profound effect on the lives of sufferers. Thank you StankGirlDiaries, for the creative and articulate videos. You can subscribe to her channel to keep updated of new videos.

link : StankGirlDiaries Youtube channel

Below is the first video : Suffering in Silence: TMAU Body Fish Odor Rare Disease THE RAW TRUTH

Note : This is an embed of the original video. If the original is ever deleted, it automatically disappears here too.





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22 June 2015

3 March 2015

24 January 2015

Young lady TMAU essay for Rare Disease Day Flickr project

# I’mNotTrash-TMAU
A young lady has written an essay about living with trimethylaminuria (TMAU) for a Rare Disease Day project on Flickr created by rareconnect.org. The image that goes with the story is striking and thought provoking. Perhaps others can also create images that get across points about malodor quickly to the public, such as TMAU or other systemic body odor or halitosis conditions. You can read her article on the Flickr website.
 Click on the image to read the article on Flickr

My comment on the image :
I am very impressed with the message of the image, as the words capture the point very well that most people suffer from a wide spectrum of malodors. Personally I think most people with 'fecal body odor' probably have an issue with all FMO3 substrates, most likely due to a weakness in FMO3 function of some sort. FMO3 oxidizes many of the malodorous sulfides and amines generated in humans. I may try to create my own 'campaign banner' to get across this message. These sort of images could play a role in raising awareness of systemic malodor syndromes I think.

The image would make a good billboard poster or bus poster for an awareness campaign

Link to the article : TMAU testimony on Flickr Rare Disease Project
Link : Her Facebook TMAU Campaign Page

Link : rareconnect.org TMAU group
Link : Rare Disease Day

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18 July 2014

Young UK TMAU lady on Irish Radio


Cassie is a young British lady looking to raise awareness of trimethylaminuria (TMAU) as it is a disorder that the public and health professionals are unaware of. Here she helps all sufferers by appearing on an Irish Radio show to discuss her TMAU. The interview was on the popular nid-morning Tubridy show on Irish national radio station RTE2FM. Such media appearances have a big impact on raising awareness. Most times the person appearing says they heard of the disorder from a previous media appearance.
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13 April 2014

Ellie interviewed about TMAU in UK media

Ellie has been diagnosed positive for trimethylaminuria (TMAU) and this week appeared in many UK media platforms to be interviewed about her TMAU. This included newspapers, radio and TV. It was very much like a UK TMAU Awareness Week. Ellie has previously appeared on the Food Hospital TV show.


Ellie on UK mid-morning UK national TV show 'This Morning'

On BBC Radio Oxford On BBC Radio 5live On BBC Radio Berkshire


Ellie in the papers :
 Ellie talks about TMAU in the Daily Mail
 Ellie talks about TMAU in the Daily Star
 Ellie talks about TMAU in the Daily Mirror 
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re Email sub service : Google is stopping this service JULY 21 new post emails will no longer happen

TMAU Stories

systemic BO/halitosis important links

MEBO Research malodor study 2016

Youtube

FMO3 reference

FMO3 wiki link

Blog Archive

TMAU/FMO3 research

UCL TMAU grant from MRC

TMAU Reference links

Overview

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TMAU story on BBC World Service
email :
sysbodyodor@gmail.com

Do you have systemic body odor ?

FMO3 Survey Form

FMO3 DNA test result survey
for those who have FMO3 DNA tested
survey still OPEN

TMA blocker pill (links)

P&G - Cleveland press release aug 2015
1st mention of 'DMB pill' dec 2015
FMO3 DNA testing
Update Aug 17 :
Genos is back with it's EXOME test
link

Note :
Exome/Genome testing may be better option than single gene testing.

See this post : link

Note : Genos Exome Testing.

Exome testing is almost the same price now as single gene testing. Also Genos is consumer friendly, which standard DNA labs are not.

So the blog offer to test solely for FMO3 is almost obsolete, and so no longer offered.


Does Genos fully sequence FMO3 gene ?

At the moment it is not clear, but hoped this will become clear over the next few months

Note : possible 'wild west' way of testing FMO3
Use an ancestry dna site and rummage through the raw data

TMAU Webinar #5 : Preti et al