NEED VOLUNTEER Testimony for the American Academy of Pediatrics Newsletter

If you have been diagnosed with genetic TMAU and wish to be part of MEBO Research's 'Raise Awareness Campaign' particularly in the medical community please contact maria.delatorre@meboresearch.org

The third part of this article is a testimonial from a sufferer who has tested positive for genetic TMAU (Primary TMAU), and who has been symptomatic in childhood and adolescence.

One of the priorities of MEBO Research is to raise awareness of systemic body odors, especially in the medical community, including the more established TMAU condition to the yet to be discovered and defined causes of fecal body odor. As a result, MEBO Research is undergoing a campaign to reach out to physicians through medical publications. MeBO has consequently been invited to write an article for the monthly Adolescent Health Newsletter of the American Academy of Pediatrics. The target readers of this newsletter, which is only available by online subscription, are pediatricians. In the first part of the article, we plan to write about the need for recognition of, and research into systemic body odors, and to make the reader aware of TMAU. Since many persons diagnosed with TMAU also claim to have fecal body odor in addition to or instead of fish odor, we believe it is important to also raise awareness of the need of further research to understand what else could be at play in this and other non-TMAU body odor conditions.

AAP adolescent health website

In the second part, we wished to raise pediatricians' awareness of the current expert views and advice on treatment for TMAU. We therefore asked Dr. Ronald Hines if he would write this part, which he has kindly agreed to do. Dr. Hines is a Professor of Pediatrics and Pharmacology, Medical College of Wisconsin and Associate Director, Children’s Research Institute, Children’s Hospital and Health Systems, Milwaukee, WI. He has a background in TMAU/FMO3 research, including the discovery of FMO1 being the main form of fetal FMO, which can be present in the liver of humans up until age 18. His studies have "...emphasized two major enzymes systems, the cytochrome P450 and the flavin-containing monooxygenase gene families."

We hope to make the third part of this article a 300 to 400 word testimonial from a sufferer who has tested positive for genetic TMAU (Primary TMAU), and who has been symptomatic in childhood and adolescence, even if the diagnosis came much later in life. The testimony could be written in whichever style is most comfortable for you, such as how you would normally describe your symptoms to a doctor, and briefly describe their response including suggesting it's all in your mind. Additionally, if you prefer (though not required), you can give a voice to all children and adolescence who may not know how to put what they’re going through in words. It could portray (though not necessarily so) the humiliation of ridicule a child encounters, the pain and suffering produced by frequent denial and negation from family members, and the frustration encountered when physicians are not familiar with body odor related conditions not resulting from a serious well-known illness, and the feeling of complete helplessness one feels at such an early age. A pseudonym could be used. The idea is to make pediatricians aware of how difficult and stressful it is to get a diagnosis, and also what odor problems the person can have (depending on what they say). Hopefully the whole article will make the reading pediatricians aware it is not that rare a problem. If anyone would like to be the testimonial volunteer, we would be very grateful if they contact us at :

maria.delatorre@meboresearch.org

The AAP newsletter is subscription only, however we plan to post it on our blog if we get permission from the testimonial volunteer and the AAP. Also, if we get a few testimonies, we may publish some of them on the blog over the months as testimony for anyone to read, if we get the permission of the writer. We hope this endeavor will be informative to pediatricians of the known resources of diagnostic testing as well as the applicable odor-management protocol available to treat his or her patients who present solely with fecal, fish, or any other type of body odor. We also hope it will promote support for more research.

María de la Torre President and Executive Director MEBO Research maria.delatorre@meboresearch.org www.meboresearch.org

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