Back to Trimethylaminuria

My Family Doesnt Know

up down
1

Hi,

My name is Maria and I joined this group today (Careplace) and I'm finding it even hard to write this thread. Life is not easy for me im 21 years old and i haven't been diagnosed but i know i have tmau. I first realized it when i was 13 I was in junior high I was one of the popular kids at school. I was in my math class when the girl sitting next to me told me I smelled bad. I was shocked at first and I felt that she was the one with the problem not me it couldn't be me. But as the months past i came to the realization that it was me I had an odor problem.
I was so ashamed, embarrassed and still am to this day. I went from having friends and going out and socializing and feeling happy to be alive. To being were i am today, once i realized i smelled bad i began to seclude myself from my friends. I stopped hanging out with them and they didn't understand why I was pushing them out of my life but I didn't want to be judge by them. I began to stay home and still do to this day.
I have never told my mom or sister about my condition because I feel that i can't trust them. I love my mom and sis. But they have big mouths and they have many friends and i dont want there friends or our family memebers to know that I smell bad.
It's getting to the point were I see that they are getting fed up with me they don't understand how I use to be vibrate, happy, sociable when i was younger to being angry and wanting to be alone all the time.
I just can't understand why this happened to me. It's just getting worse I go to college and im majoring in accounting which i've just realized who is going to give me a job smelling like i do. I really dont see any hope for myself. I cry every night and ask god to end my life everyday.
I know I have to tell my family but I dont see how, i just know that sooner or later they'll find out.

Trimethylaminuria (conditions)
Mery
  • Mery
  • 10 care points
created Sep 27 '07

46 replies

up down
2

I have looked into hyperhidrosis, but I don't sweat that much. As far as bromidrosis it has some similarities as the smell does (mainly) come from my armpit area, but I have it even after just getting out of the shower before I have a chance to sweat. Even though sweating does not seem to actually increase the power of the odor it increases the range.

Matt
captinkid
created Jan 29 '08
up down
0

Matt,

Have you looked into hyperhidrosis or bromidrosis? Especially since you mention sweat,it could be that and not TMAU. Worth looking into.

Shania
shania
created Jan 29 '08
up down
0


This opportunity is available to everyone who has tested for TMAU in the
U.S. and got a positive test result. Please read on and please contact the
doctor directly (if you don't get through, please leave a message and he'll call
you back asap). Dr. Alfardan is affiliated with the UDHSC lab managed by the
lovely Susan Tjoa who many of us know because she assisted us in getting
tested. If chosen to participate, you'll need to have a copy of your urine test
results and, if you've misplaced it, you will be able to get a copy from that
lab or from Drs. Preti, Cashman or whomever did the testing for you.
FYI, If you live in the U.K. or Europe, a similar study is underway at
Sheffield Children's Hospital in Sheffield,U.K. You will need a referral from your
G.P. before contacting Nigel Manning regarding getting your blood analyzed.
If all who can will step forward and participate, our dream of finding a
cure will be realized sooner than later don't you think?
Good luck,
Ronnie
``````````````````````````````````````````````````````````````````````````````
```````````````````````````````````````````
The University of Colorado at Denver Health Science Center, Division of
Genetics and Metabolism and the DNA research lab are conducting a genetic study
of Trimethylaminuria (previously known as Fish-odor syndrome).
Benefits:
· Receive your FMO3 (trimethylaminuria) gene analysis free of
charge.
· If desired, receive phone genetic counseling regarding your results
free of charge.
· A summary of overall study results will be available for
participants from the Trimethylaminuria Foundation (TF).
Eligibility: To be eligible to the study the following should apply:
· You carry a diagnosis of classical TMA.
· Biochemical analysis (choline loading test or urine free TMA) in
the classical range.
· Provide a copy of the biochemical report.
If you are eligible, we will be requested to sign a consent form or for
minors parental consent with assent. You will also be asked to provide limited
health information regarding your diagnosis of TMA on the phone or through a
brief questionnaire.
Patients with trimethylaminuria who do not fit the above criteria can
contact their physician for CLINICAL testing of FMO3 gene testing which will be
available through UCDHSC at a cost. This is not part of the study.
For more information regarding the study and eligibility, please feel free
to contact Dr. Jaffar Alfardan by phone:
or email: _ )

**************Start the year off right. Easy ways to stay in shape.
http://body.aol.com/fitness/winter-exercise?NCID=aolcmp2489
Ronnie
created Jan 24 '08
up down
0

Maybe a nutritionist can help her plan meals to minimize symptoms. I am
sorry for your daughter and your family.

-----Original Message-----
From: keh ]
Sent: Monday, January 07, 2008 11:14 PM
To:
Subject: Re: [trimethylaminuria] My Family Doesnt Know
Kathi
created Jan 09 '08
up down
0

Well, my daughter (will be 13 soon) have got her urine test back.
She is definitely positive and on severe side of the spectrum.
Her TMA to oxidized-TMA conversion rate is just 30%. Dr. Preti
has sent us a diagnosis letter. We will try our best to help our
daughter to live with it.

Keh

-----Original Message-----
On October 18, 2007, Kathi wrote:
It is a genetic issue. We are missing an enzyme that processes choline. I
was diagnosed at 56 with no history. It appears that what prompted me to
become symptomatic was a severe hormone deficiency coupled with extreme
stress. It can happen at any time. Sometimes girls show symptoms when they
start having periods. Babies can show symptoms, and sometimes women don't
have an odor until they start menopause.

-----Original Message-----
From: keh ]
Sent: Wednesday, October 17, 2007 10:24 PM
To:
Subject: Re: [trimethylaminuria] My Family Doesnt Know
keh
  • keh
  • 0 care points
created Jan 08 '08
up down
1

I used to go to the gym everyday for 2-4 hours, but I heard lots of complaints around me about a mysterious terrible odor. I knew it was me. I have since canceled my gym membership and I spend my time at home on the computer.

I can smell myself when I sweat and it is really really REALLY bad, (It makes me sick) I can't think about how much worse it is for everyone around me. I am happy just after showering and I even ask my family how I smell and they like it! However if I sweat even a little bit and I sweat a lot in the gym it is just as if I have not bathed in weeks.

So working out did not help my condition, however I have learned that eating garlic does not seem to make it any worse! And I can blame my smell on the garlic I always eat. (My favorite food now and I let everybody know it)

Matt

captinkid
created Oct 29 '07
up down
0

Dear Maria,

You write so eloquently and with such wisdom! I will take your advice.

-----Original Message-----
From: tree ]
Sent: Wednesday, October 17, 2007 2:42 PM
To:
Subject: Re: [trimethylaminuria] My Family Doesnt Know
stinky
created Oct 23 '07
up down
0

PS Susan Tjoa at UC is very good to work with. She will send you the choline to mix with a beverage. The test entails taking urine specimens over 24 hours, freezing each container separately, packing them in dry ice and shipping to UC.

-------------- Original message --------------
From: stinky >

>

Kathi
created Oct 20 '07
up down
0

Thank you ; this information is very valuable to me. I will follow up.
Joyce

-----Original Message-----
From: kevin79 ]
Sent: Thursday, September 27, 2007 9:49 AM
To:
Subject: Re: [trimethylaminuria] My Family Doesnt Know
stinky
created Oct 20 '07
up down
0

Your messages have been very helpful to me; I will contact Colorado today.
Thank you very much. Joyce

-----Original Message-----
From: Kathi ]
Sent: Monday, October 01, 2007 12:44 PM
To:
Subject: Re: [trimethylaminuria] My Family Doesnt Know
stinky
created Oct 20 '07

Please login or register to reply.

Looking for more? Check out Trimethylaminuria (conditions) .

Statistics

  • In Trimethylaminuria
  • 1510 views
  • 46 replies
  • Created over 5 years ago
  • Last Activity over 5 years ago

Tagged with:

Trimethylaminuria (conditions)

Question about Trimethylaminuria?


Ask question

Related Discussions

advertisement
advertisement
advertisement