Conference Summary & Survey: Is your halitosis an SELENBP1 mutation?

Summary Conference
Ron Wevers, PhD.

In collaboration with a small group of TMAU sufferers, the VKS organized the first official national conference for people in the Netherlands and Belgium dealing with odor conditions, including TMAU. The conference was conducted in Dutch, and our MEBO Mental Health Director, Crissan Rosalia, was kind enough to translate it for our international community.

The presentations were done by Professor Ron Wevers, PhD., Faculty of Medical Sciences, Radboud University, who has been researching halitosis for many years and who has been supportive to our international community, see all posts in this blog on Dr. Wevers (scroll down to see all), and by dietician Erasmus MC Rotterdam.

Click on icon in the upper left of this post for the summary of the conference.
The conference presentation includes the following:

• Halitosis
• Metabolic conditions
• Characteristic of odors
• SELENBP1 defect – cabbage /rotten egg odor
• Diagnostics and Treatment options for SELENBP1 defect
• TMAU type 1 & 2 and treatment
• Future research ideas for the community of malodour patients
• Presentation from dietician Erasmus MC Rotterdam


Professor Wevers has a couple of suggestions for us as Crissan explains:

His advice is to gather as many people as possible with the same symptoms and characteristic odor types. Then bundle these cases and apply for testing at Radboud Hospital simultaneously, then the lab can compare the DNA results. This might help the lab to find similar mutations amongst the dna samples. The challange is going to be the funding of course, patients might have to pay for the test out of their own pocket. And referral from a physician is still needed.

Click on icon for survey

Based on information Dr. Ron Wevers, PhD., has provided us, Crissan created a screening questionnaire for SELENBP1 that sufferers can fill out to check if they might have an SELENBP1 mutation.

Link to the questionnaire and disclaimer:

https://nl.surveymonkey.com/r/SJWJLJB

Our whole international community is very grateful to Dr. Wevers, dietician Rotterdam, Crissan Rosalia, and all others who worked very hard to bring this conference to fruition.

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Some information on Dr. Wevers' work:

"Wevers : New gene suspect for METABOLIC MALODOR : SELENBP1"

Pubmed : SELENBP1 abstract paper

Dr Wevers webpage

Media links on the story :
Gizmodo
Medical Xpress
Science Daily
Genengnews
UCLA press release

María
María de la Torre
Founder and Executive Director

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