Sep. 02, 2010




















   

Q:
I have a condition called "trimethylaminuria." It is a syndrome in which I cannot effectively digest choline, something found in many products. I am 16 and have had the problem since I was 13. The symptoms include a fishy odor that may vary to a smoky, sewage or fecal smell depending on diet I guess. I cannot live through this, it has given me an anxiety toward social situations. I want to commit suicide to get the message across that this disease needs a cure.
   
A:
It’s very clear that you are very depressed about having trimethylaminuria. Before you do anything I hope you will let a trusted person know how badly you feel and that you are thinking about suicide. This can be a parent, teacher, doctor, minister, friend or counselor. If the friend is about your age, please don’t make that person promise to keep your feelings a secret. There are also hotlines available in every area of the country to assist people who feel suicidal. (Click here for a list of hotline phone numbers.) Although no one can make your condition go away, it can help to share your feelings and get emotional support.

There are also some other things that may help. As you know trimethylaminuria is a very rare "inborn error of metabolism" also called fish odor syndrome. It occurs when there isn’t enough of the liver enzyme present to breakdown an amino acid present in food and amino-trimethylamine (TMA) builds up. TMA is excreted in the urine, sweat and breath, causing a strong fishy odor. Many times it isn’t noticeable until children become adolescents. For some, the odor problems may disappear as they get older. The syndrome seems to occur more in women and researchers suspect that it has to do with sex hormones.

Treatment starts with an alteration of diet. All foods that contain trimethylamine or choline should be eliminated from your daily intake. Foods that contain these ingredients are eggs, liver, legumes (beans) some grains, some saltwater fish, and many more. For most this change in diet helps with the smell, but for others some additional things may help. Antibiotics may be used to reduce the bacterial load of the intestines.

Depression is very common in this condition and is certainly understandable why this occurs, especially for adolescents. It's not clear whether antidepressants can help because some doctors believe that the missing enzyme may also break down certain drugs such as antidepressants. A few people with the disease reported certain antidepressants didn’t help and might make the odor worse. However, because the condition is so rare, there isn’t research available.

Please talk with your doctor and your parents about how badly you feel. They can help. If you haven’t seen a specialist who knows about the condition, please get your parents to make an appointment for you. They can find someone to help you by having your doctor contact the nearest large medical center associated with a medical school. Programs like this have some experience with your condition and have staff who can help.

There are also a number of resources available on the Internet. Since you contacted Teengrowth, we know you are familiar with how to reach them. Here are a few. Good luck.

Additional Online Resources

  • CLIMB (Children Living with Inherited Metabolic Diseases) www.CLIMB.org.uk
  • Association for Neuro-Metabolic Disorders Email: VOLK4OLKS@aol.com
    Genetic Alliance www.geneticalliance.org
  • Trimethylaminuria Foundation Email: trimeth411@aol.com
  • International Rare Diseases Support Groups www.rarediseasesupport.info
  • Body Odor Support http://groups.msn.com/BodyOdorSupport/whatistmau.msnw
  • Trimethylaminuria Midwest Region Foundation Email: EMPORIA962000@YAHOO.COM


    Posted 11-10-03

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    As a reminder, this information should not be relied on as medical advice and is not intended to replace the advice of your doctor. Please read our full .

  • Last Updated
    Sep. 02, 2010
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