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Wednesday 29th February is International Rare Diseases Day. It would be good to make our voices heard on this day. you may say that bloodborne halitosis is not a disease and you are right of course. However, all sufferers of systemic odour conditions or metabolic disorders have to come together to be heard. Odour disorders need to be taken seriously and including them under the umbrella term of rare disease is useful for us so we can take advantage of this special day.
I am going to contact all of the organisations from last year’s raising awareness campaigns (who have already been informed about TMAU and its effects) and remind them of our presence. Please join in this effort by doing the same! Below is the gist of the e-mail I will send to them and a list of the UK contacts we targeted last year. It is a good opportunity to e-mail anyone you know with the MEBO Research petition and also to contact organisations in your own country if you are not in the UK. Please add any contacts from outside the UK to the list below and UK sufferers will be sure to support you by e-mailing them as well. You can e-mail most of the contacts using blind carbon copy to save time but I will also send some letters via post as most professional organisations are obliged to reply in writing to any letters received.
The gist of my e-mail: TMAU and other foul-odour-producing metabolic/systemic disorders (which, unfortunately, are still un-named) are very highly under-diagnosed conditions. TMAU (and other odour disorders) are considered rare disorders. However, the fact that they are so rarely diagnosed is a key issue. We have contacted you before requesting help with a simple task – raising awareness of TMAU and odour conditions primarily amongst the medical professions. We ask you now, on this day which recognises rare diseases, to reconsider the plight of sufferers of this devastating, invisible disability. If our existence continues to be ignored, research is less likely to occur and a cure will not be found. It is our right to be heard on this day and to protest against the social rejection and dismissive attitudes we face.
Below is a raising awareness petition which can be signed (anonymously) by any individuals who believe that sufferers of odour disorders have the same human rights as other human beings.
Apologies for those e-mails which do not work. Please add relevant contacts to the list. I have not included online contacts or addresses for written letters but let me know if you would like these also.
Any other ideas?
The waters are starting to be stirred. If we come together we will have more impact and, hopefully, one day things will change...
I think most of us don't think we have TMAU, and feel so lost and defeated that this seems pointless. It certainly won't product instant results like taking a pill or even going on a certain diet.
It seems like a fruitless chore.
But I know it's a good thing. I don't have time this moment, but I will try to put something together to forward to these addresses before Feb 29th.
Remember everyone, this is not just about TMAU. We odour sufferers are in this together. Take part in these initiatives PLEASE and change will come. Think of the next generation. Would you wish what you suffer to be suffered by your children? This is not a futile mission. Be positive and make change...
Although (secondary) TMAU and similar, un-named metabolic disorders are not as rare as the medical profession pretend, we are celebrating Rare Disease Day on Wednesday 29th February by promoting a video made by Dr Cheryl Fields to promote awareness of the condition(s). The video needs to be voted for in order to be aired on CNN. Please support us by voting for this video (it takes a minute to sign up to CNN for this purpose). http://youtu.be/4SEN0nDtmmA
Also, please forward this e-mail to anyone who may be willing to support our cause.
Neither is TMAU a 'disease' as such. Odour disorders which are largely incurable have something in common - they are often the result of a metabolic disorder or dysbiosis. This means that most incurable odour conditions have something in common whether they are named/recognised or not; they are systemic in nature or bloodborne. Unfortunately, TMAU is the only condition which has been officially named or recognised therefore we use this condition as a foot in the door of the medical professions who are ignoring our very existence. I agree that these disorders are not as rare as the medical profession claim (most cases are unrecognised/unidentified and many -including TMAU- go undiagnosed for years so how can they just say they are rare).
However, the point of this campaign is: A brave sufferer of an odour disorder made a video to raise awareness of her condition and its effects upon her life. She spoke on behalf of odour sufferers everywhere and promoted the video at the Rare Disease Day event. The negative effects of these conditions are the same for all of us whether we are 'recognised' or not. In support of this effort, I suggested that we collectively e-mail medical establishments to make them notice us. These campaigns actually do work and have brought about some small changes in very conservative UK establishments who would like to ignore us.
Archimonde, if you have another approach to getting the medical profession to take halitosis and odour conditions seriously, I would be very happy to support it. It would also be very encouraging for those who visit this site to read about your ideas; most of our lives are already quite full of negativity so it would be really good to hear your positive approach to dealing with these conditions.
For those of you interested, there is a link to the events for rare disease day and an opportunity to make your voice heard to congressmen etc in the US.
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