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Wednesday, December 31, 2008

Smelly moments of 2008







With the closing of the year, it seems a fitting time to look back at the year as it affected the bloodborne body and halitosis community, The Smelly Moments of 2008.

It was a year where the community 'came out of the dark' in its most prominent way yet, especially on the internet. No real breakthrough in medical advances were forthcoming as of yet, probably because they are still unaware, but some experts have been looking in our direction, as noted below, and the groundwork is beginning. In a community sense, it has been a remarkable year. A psychological shift has occurred. As well as ignorance from the medical field, fear and shame have played major roles in obstructing our own progress, for obvious reasons. The grip these two imposters have had on us has been greatly reduced over the last year in the internet world and in the real world, following on from the brave people who have made TV appearances in past years, and all the other previous work on the issue. A sense of self-help amongst the community seems to have formed, along with a visible presence on the internet.

Some 2008 memories:

This blog - Begun in May, and now with 410 posts by the end of 2008, including references to scientific papers, posting of Dr. Werner's paper, interview with Dr. Lachmann, a post written by Dr. Lord on dysbiosis, testimonies, community announcements such as references to Arun's scientific questionnaires, conference calls, and meet-ups. The aim is to be a new platform and another 'front' in the battle against metabolic body odor and halitosis. On average there can be about 50 visitors a day, from 75 countries, despite still lowly ranked on google.

Medical Advancements:

Arun Nagrath, Pharmacist. BSc Pharmacy Hons, MSc., Postgraduate researcher in Odour Analysis. In addition to Arun's scientific survey of Body Odor condition mentioned above, which was originally devised and modified in consultation with a consultant in metabolic medicine/TMAU, the following experts have also made the following contributions to this blog:

Dr. Detlef Werner, M.D. gave us his article Die Trimethylaminurie (fischgeruchsyndrom) - Hinweise auf Ein neue Therapiemöglichkeit mit Desmopressin, Trimethylaminuria (fish-odour syndrome): Hints for a New Therapeutic Option with Desmopressin, to post in this blog in hopes of promoting research.

Dr. Robin Lachmann, PhD, MRCP, Consultant in Metabolic Medicine, National Hospital for Neurology and Neurosurgery in London, was kind enough to be interviewed by Vanita, a Member of the TMAU Foundation in the UK, and the interview was posted in this blog.

Dr. Richard S. Lord, PhD, director of the Department of Science and Education at Metametrix Clinical Laboratory, where he served as vice president of research and development and laboratory director, has very kindly written in this blog for us in which he discusses his findings that represent another step in the unfolding story of what specific patterns constitute states of dysbiosis. In addition to his many credentials, has had a staff fellowship at NIH working in the Institute of Arthritis and Metabolic Disease. His knowledge of Metabolic Disease and dysbiosis, and his willingness to work with us gives us great hope for future research and discoveries about the causes and treatment of body odor conditions.

It has to be said that metabolic body odor and halitosis is still an unknown problem amongst the medical community, even trimethylaminuria to 99.9% of them, and so not much was achieved this year. However, contact is now starting to be made.

Conference calls:- Started by Cabel Hall early in the year, the conference phone calls had a huge impact on the community. Callers have numbered as high as 72 for Camille's memorable call. Including bi-weekly General Conference Calls sometimes featuring special guests, bi-weekly Women's Conference Calls, and impromptu conference calls, the calls are now an integral part of the community.

halitosisMSN forum restructured: After years of orphaned moderating and threads linking to deaf singles sites, the MSN forum was finally 'reclaimed' by the community, to be a safe haven for smelly people everywhere. And now the MSN Forum is getting ready to migrate to the new forum currently being designed by Kristen Jugueta.

Body Odor and Halitosis Personal Phone support: A few sufferers, such as Arun and Cheryl Fields, have kindly given their phone numbers out over many years, in order that anyone out there has someone to talk to, but this year saw a remarkable blossoming of this vital help. Now many sufferers kindly list their phone numbers on the MSN Body Odor Forum, so that personal support is only a call away.

Kristen's blog and website: A prominent pioneer this year was Kristen from Melbourne. She has big plans to help define the odor conditions, and as well as choosing a career in genetics in order to research further, she also plays a major role in setting up websites for others as well as her own, all to do with odor conditions and to further help. She also cheered us up with her singing.
http://www.kristenjugueta.com/ and http://www.tmauresearch.org/

Yahoo Trimethylaminuria Forum for the sufferers, by the sufferers: The yahoo TMAU forum was just one of many health forums started by it's original owner. For many years Sharon has been in fact the one running it. After a forum change in the summer, Sharon decided to make a new Yahoo Forum under her management, by and for body odor and halitosis sufferers who know/feel they have trimethylamuria. Already it has 235 members.

TMAU testing:
The TMAU test will likely become the most common metabolism test in the local metabolism unit someday, but at the moment it still remains a very rare test. In the USA, Arkansas Childrens Hospital took a more prominent role in allowing people to test direct via their Dr or via the Mayo Clinic, for the cheapest price yet. Sadly Susan Tjoa of the Denver lab that has tested for TMAU for a few years passed away, but the Denver lab likely still tests. In the UK, Medichecks added the TMAU test to their list of tests, unfortunately at a price that can't be recommended. The Doctors Laboratory in London also listed the test, both of them sourcing it from Sheffield Childrens Hospital.

Websites : Body Odor and Halitosis sites are starting to appear on the internet. Perhaps the last 'not uncommon' health-problem using the internet as a tool. Rob Brown is starting the Australian Trimethylaminuria Foundation Charity site, the website currently being built. There has also been mention of the TMAU Foundation building a website.

Arun's scientific Body Odor Survey had an overwhelming response of 98 participants. The results are currently being evaluated. The results can be seen here

Anthology: Richard Cook is collecting an anthology of poems, essays, short stories, and personal quotes written by persons suffering from a body odor condition who belong to the MSN Body Odor Support Group community. Our very own Ben Rimmer will include his portrait paintings of each author to enhance the beauty of this work. This anthology will be used in a fundraising effort to support the research goals of the Metabolic Body Odor Charity currently being registered in the UK.

Meet-ups: The original founder of our meet-ups, Arun, has been organizing them for years in the UK. This year, he organized one in Manchester in the summer, the Thames Festival Meet-up in September, and the Christmas meet-up in December. Sonya and Rebecca met in the US, and more meet-ups are being organized for the year 2009. Scott is organizing one in Chicago, Lori in Atlanta, and Jess and María in Miami. There will be many more to come throughout the year...

So overall it seems much progress was made in social networking and in sufferer websites, further diminishing the shame and fear, which is very important, but in medical advancement little progress was made. However, progress is being made in raising awareness and promoting research in ways that will hopefully bear fruit in the coming years, hopefully starting with 2009. A lot will be done in 2009 to raise awareness. And the blog is always here now, for experts to contact should they find it on the internet.

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