Discussion
LET'S HAVE A DISCUSSION.
YOUR OPINION MATTERS**
Thanks to all who participated in this informal survey. It is intended to show Odegon what the needs of our community are, and as expected, it is very diverse. Some of us tend to forget that the vast majority of sufferers test negative for TMAU, and MEBO is committed to pursue answers to this undiagnosed group of sufferers. As Steve Rawlings, Director of Odegon tells me, this product will works well on some conditions and not as well on others. For example, it will do nothing for halitosis, unless using the product in a mask; and it may not make much of a difference if used under the arm when odor is emitted from the scalp, breath, chest, groin, etc. Each area would have to have the proper protection in order to control the odorous chemicals in that area, whenever possible, and it's not always possible.
Approximately 1/3 of the 30 participants of this survey said they suffer from Bromhidrosis, Hyperhidrosis and "Other", approximately 1/3 suffer from trimethylaminuria alone, and approximately 1/3 from a combination of TMAU and Halitosis. Only one person suffers solely from Halitosis, possibly because since the Odegon technology would not be helpful in controlling breath halitosis symptoms, other halitosis sufferers didn't participate in the survey.
An interesting note is how most sufferers of TMAU seem to have odor throughout the body, though some noted groin, axillae, or feet only. Perhaps as a TMAU sufferer manages to reduce odor with the TMAU odor-management protocol, only certain specific areas remain with some degree of odor. In this case, if it is the groin, underarm, feet, collar area, chest or back area that remain odorous, the Odegon patches or garments may help. They are hand or machine washable, and dry cleanable as well. In more extreme cases, perhaps one would need to change clothes in the middle of a workday or school day to another garment with the patch. It may work for some, but not for others, and only each sufferer can determine his or her own needs, which may not apply to other sufferers.
One thing I've learned from my years of working with this international community is that the causes and manifestations of our conditions vary from sufferer to sufferer, and in fact, vary from time to time in each sufferer. Therefore, each sufferer needs to pursue understanding through testing and becoming involved in research personally, or supporting research financially. All need to strive to become informed and knowledgeable to better determine what may work or not work for himself or herself. Each must become sophisticated in the decision making process to determine when and what special occasions requiring special measures.
María

Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)

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