Reflections of my dreams and goals these past 3 years

As MEBO Research continues to pursue large funding/grants for research, I was asked to write a story for a grant proposal about how and why I decided to start the charity. I then remembered that I had written three years ago, when we first began this blog in April 2008, an Intro letter in which I address these questions.

Looking back over these three years, I have been steadfastly focused on the concepts I address in this letter; and feel content in seeing just how much we have indeed accomplished in such a short period of time. I felt so alone and distant from experts in 2008, so many posts in the forums at that time were somewhat focused on alot of self-defeated perspective because truly there was no recourse to speak of. Shortly after I wrote this piece, all the labs in the US STOPPED TESTING FOR TMAU for a whole year due to lack of demand as a result of lack of a solid community organization at a national and international level. This was truly a very depressing time.

After so much effort from so many people who have shared my dreams and aspirations these past three years, I now feel so hopeful and feel that real work is just around the corner as researchers from many countries in the world have significantly united with sufferers, that I can almost touch it, and it feels so good! Yet at the same time, I am fully cognizant that there is so much work still ahead of us.

Even though I frequently feel drained and overwhelmed, I draw strength from the volunteers that approach me from time to time, who have become very inspired and dedicated to share this venture with me. Even so, more volunteers are needed to help the various testing, research, Public Relations and Community Outreach projects in the works that are soon to come to fruition, and more information will be forthcoming about these in the near future.

Meanwhile, I invite everyone to read my Intro letter copied below in hopes that you feel as inspired as I do.

With all my love to everyone in this community,

María

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Intro letter

Thursday, April 10, 2008

As a 54 year-old married mom of two sons living in Miami, Florida, I have personally struggled with severe body odor in my family throughout my life, and especially these past eight years, has been impossible to control. The most exasperating aspect of the struggle to control and cure this condition was not finding answers from numerous well-intentioned medical doctors, including gastroenterologist, dermatologist, allergy and asthma specialist, and othorhinolaryngologist. As a result, I had no other recourse but to turn to the web to find guidance and answers.

After having read numerous research articles online from around the world, heart-wrenching posts by body odor sufferers in many Body Odor/TMAU forums, and after watching various news and talk shows regarding this matter, it seems to me that most cases don’t fit the traditional idea of body odor as being an external skin problem. By that I mean that it is bloodborne and systemic, to be released through the pores and any way it can, through all the body cleansing organs - lungs, kidneys, skin, and glands. I am also amazed at the numbers posting on the boards. It seems as if it is far from a rare problem, although symptom intensity seems to vary in degrees from one person to another and even in one person through time.

I began to see a pattern emerging in numerous parts of the world suggesting that body odor is a medical condition that usually arises from more than one cause in each individual sufferer, such as metabolic and/or gut bacterial imbalance, and possibly other causes yet to be discovered, many of which are genetic in nature. These multiple causes in one individual sufferer may vary from another sufferer, thus making it extremely difficult if not impossible for sufferers to find a lasting solution to their particular body odor condition without additional research and professional guidance.

The function of this blog is multifaceted as it serves as a channel between experts and sufferers to promote awareness and funding for research, and to achieve a good solution to enable sufferers to help themselves. First and foremost, I would like all sufferers who visit and participate in this blog to be assured that I commit to doing everything in my power to protect your privacy and confidentiality throughout this process. And experts, this blog will serve as a tool for you to tap into an international pool of sufferers who are very eager to assist you in finding a good understanding of the various causes of body odor and a solution to our problem; so please feel free to get in touch with me at any time, and I will do everything possible to put you in contact with whomever you need to reach regarding this matter. The third important objective of this effort is to establish a virtual worldwide body odor and halitosis research center to remain in close contact with sufferers through this site.

SUFFERERS UNITED

Through this blog sufferers of various body odor forums, as well as other sufferers, can come together in larger numbers to provide the scientific community with data for research, surveys and questionnaires. In turn, sufferers can find in this blog, online articles of scientific and medical information related to body odor and its management. In this manner, I hope that sufferers and experts unite and arrive at a better understanding of the various causes of body odor, develop an effective course of treatment for each condition, and most importantly, find a cure.

It is my sincere wish that the outcome of this effort will result in a future commonplace practice of a sufferer going to his or her family doctor anywhere in the world presenting with body odor as his or her primary complaint, that the physician would immediately know what metabolic and/or microbial diagnostic exams are indicated in order to arrive at a speedy diagnosis and treatment plan to control and eliminate body odor. It saddens me that people can be suffering so much misery, with the medical world seemingly unaware except for perhaps a handful of experts who know about trimethylaminuria. It is also my aim that all private and group health insurance plans as well as national medical plans routinely cover the diagnosis and treatment expense of these conditions as it would any other medical condition so that bloodborne body odor sufferers can afford to seek proper medical treatment.

I therefore invite all members of all body odor forums and websites, and all who suffer from body odor, as well as the scientific, medical, and healthcare community throughout the world to unite and to participate in this endeavor to find real answers. Sufferers may do so by providing as much accurate data as possible to whatever questionnaire or survey researchers post in this blog to assist with their research, while feeling confident that their privacy will be protected. Researcher should feel welcomed with open arms to carry out their research projects in this endeavor tapping into a strong pool of available subjects in a joint effort to find a cure for body odor. In this data and information exchange effort, we can unite at an international level to achieve all these goals so that we can provide a happy and productive life for ourselves, our children, and future generations.


María de la Torre
Founder and Executive Director

A Public Charity

www.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

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