My perception of the Conference Call 30MAR w/Founder of TF Foundation

&IDHi everyone,

I don't know if some of you were able to join the conference call, especially if you live out of the country, so I'm writing you some of my perceptions of the issues discussed as I understood them.

The conference call was an experience to say the least. At one point in time, there were 50 people on this conference call, and our Special Guest shared a great deal with us about her personal experience with TMAU and her leadership role in the Trimethylaminuria Foundation.

I most certainly admire her inner strength and drive. She is definitely a fighter who battles her Depression with action. She is also very opinionated, as she does have 10 years of experience working with the press, National Institute of Health, doctors, employers, support groups, and the Trimethylaminuria Foundation in NY. She is very dedicated since she does this all on her personal time. If you want to see more info on her, go to


http://groups.msn.com/bodyodorsupport/general.msnw?action=get_message&mview=0...




After well into an hour an a half of the call, I presented some of my ideas. She listened well and gave me time to speak. I basically told her that I feel the need to promote awareness of Body Odor conditions in an effort for it to be considered a medical condition. This would then allow for the private insurance companies and national medical programs to cover the diagnostic and treatment expense for Body Odor . She had numerous replies to my ideas.

One was that Body Odor is too vague a term that could include not only serious illness, but could also include a simple hygiene problem; as a result, it could not be treated as one condition, and insurance companies or national programs would not work with it as a single medical condition. She said that each condition would have to be treated separately. Since she has TMAU and is the heads of TF, she addressed the TMAU aspect of my suggestion.

I expressed how I felt that we need to move body odor from being a social taboo in which its victims are “hidden away” to not disrupt mainstream society, to a well understood illness just as mental illness is now accepted and supported socially. She did seem to see the correlation of the historical social treatment of mental illness to the current social treatment of body odor. She’s all for promoting TMAU awareness in the medical field, in the job market, and socially.

She did express deep frustration with her 10-year experiences in this endeavor, however. She said that when NIH held the 2nd conference in 2002, the NIH representative approached her and asked her where the 100 TMAU sufferers were for whom they had reserved seating. Most people diagnosed with TMAU did not show up to the NIH Conference 2002. She said that many people had written to NIH telling them their stories to try to get this conference organized, but in the end most of them didn’t show up for the conference. In so many words, Our guest said that without unity and drive, the cause dies down and becomes ineffective.

In so many words, she mentioned how AIDS-awareness movement and other movements have had great success as a result of its supporter participation [public demonstrations, fund-raising concerts, and other events to heighten international awareness], but she was very frustrated with the fact that TMAU people just haven’t stood up to the plate to accomplish the same. She said that they all had excuses, but the activists of other movements didn't use the same excuses to stop them from participating.

She said that the press is usually willing to have TMAU sufferers tell their story, but then afterwards, nothing much comes out of it because it ends up being more informational than organizational. For it to be organizational, you need greater numbers of active participants.

She sounded to me like a woman who had tried to accomplish so much and is now basically frustrated with the lack of active supporters. She and other callers were dilligently trying to organize support group sessions throughout the country.

The organizer of this conference call, a gentleman from Kentucky called Cabel, gave me his Cell Phone number for me to call him. I think I will do so after I turn in my university class term paper on 4APR.

Another very important point raised by her is that to get greater job security, one has to first get a medical diagnosis. Once it is established that you have been diagnosed with a specific medical condition, like TMAU, then you have more legal rights. You are then empowered to go to the Human Resource Department of your company, and present your case by explaining that you are aware of your medical condition and that you are attempting to get treatment for it. She said that HR usually appreciates your efforts to work with the company to avoid any uncomfortable work-environment related issues, and if need be, a person with TMAU could ask to be moved to a more comfortable part of the office to relieve personal stress resulting from the medical condition in the work setting.

I had to hang up after She did because I was starving, since I had not eaten lunch yet and it was already 4:30p.m, so I don't know what took place afterwards.

It was indeed interesting seeing what obstacles our Special Guest had faced as the head of the Trimethylaminuria Foundation over the years. I’ll have to think about this throughout this coming week to re-group my thoughts about what action to take to best help promote awareness in the medical field.

Please feel free to give me your ideas as well. I hope you don’t get discouraged with all the obstacles she was addressing.

Unfortunately, starting tomorrow, I do need to focus on my university class term paper, which is due on the 4th of April. The following week I’ll get more involved in the forum again.

Talk to you later.
mpdela