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

30 April 2016

Campaign : get TMAU on the USA newborn screening programs

Quickfire TMAU Campaign :

Email the USA Newborn Screening Program recommendation committee.

Tell them to add TMAU.
They meet about 3 times a year.
They compile a suggested recommended list to each State.
Each State makes it own newborn screening list.

Possible problem :
For TMAU, the 'phenotype' (e.g. urine) test might be no use in newborns.
It may likely have to be the genetic test only.
But presently screen programs seem to be based on 'phenotype' (blood) tests.
But we can try.

est. chances of campaign success : 5%

Campaign :

Email the committee : Advisory Committee link

Probably for US residents/citizens only.
We can start campaigns in other countries.
For comments to be read to the committee, they ask name, address etc.

Email example (this can be copied / adapted)

Please consider the following condition for the recommended list :
2 main types are documented : TMAU1 (genetic) and TMAU2 (all other forms, mostly overload)
In newborns, probably only the genetic type could be diagnosed.
In my view, perhaps the most common 'rare disorder' when you include all who report of smell incidents at some point (including outliers, mild cases etc)
FMO3 is a redox enzyme and has a wide range of substrates. Problems may not be limited to TMA, but to drug tolerances etc.
Whilst no obvious physical symptoms, the smell symptom has a great effect on mental health.
Sufferers tend to be under-employed, unemployed.
In my opinion, all forms of TMAU may affect many more than anticipated.
Adding it to the screen program would at least identify severe genetic cases.
In theory, there is a management protocol based on diet.
Identifying potential sufferers at birth could save much anguish later.

More information is available on request

Below are some informative TMAU links :
Gene Reviews : TMAU
Omim page : TMAU
Clinical Utility Card :TMAU TMAU 

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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

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