Living and Working with Trimethylaminuria (TMAU)

I would take fifteen showers a day and then soak in the tub for another few hours because I thought it was bathing. I did not know what it was. I want to be clear for the viewers today… I'm not a medical doctor, when people see the PhD they assume the scientific field, but I am not. So I want to be very clear. So my interpretation might be a little different than perhaps some of the scientists’. But basically what it is The FM03 gene that has a mutation on it. And that mutation usually prohibits the liver from breaking down by-products of proteins therefore the trimethylane Just doesn’t pass normally as it would in someone without the FM03 gene mutation. And that usually builds up in the body And it can come out in the patient’s breath, sweat, I’ve heard in their scalp Tear ducts in their eyes Any opening Often times this disorder causes paranoia as you can imagine. When you see someone do that, it might not even be the TMAU patient But because they've been ridiculed And heard so many condescending comments that they immediately think that its them. And sometimes they will get in to stress mode And when we have stress, at least for me, I start to sweat more And so forth That makes it even worse So it’s a never-ending circle For some people, the diet, the low choline diet, using low PH soaps, seems to help. Unfortunately for others Nothing really seems to help Many physicians will assume, due to their training, That it's a psychological problem For example it took me 3 years going from doctor to doctor. Before one doctor finally said OK, I’m going to give you this test. It’s about 650 dollars I know for perhaps You or I, or someone You’re saying, “What’s the big deal Cheryl?” Well, some of the people with TMAU are either unemployed or underemployed. And social security Doesn’t recognize TMAU as a Disability. So, 650 cash for someone who is not working, or barely paying their mortgage or rent can be phenomenonal. Following the phone interviews they always tell me Cheryl wow You are our perfect candidate And then, You get flown down And you can tell that The faces, the enthusiasm Just kind of drain out of them. If you do get a job, it’s a battle to keep it People have told me Cheryl, I walk into work everyday, and there is soap on my desk, detergent That hasn’t happened to me, But I can only imagine how they must feel walking in every morning to that. There is someone who just called me a couple months ago From Washington DC and wanted help One of the things I told the employer was why not move Jane’s office down to the end Where there is not as many people And there was 2 windows there and from what they're telling me I got an email from her boss and her and it's working great For those of you watching today you are not alone It may seem that way But for those of you watching, my phone number is on the internet And I get calls at 3 in the morning So you’re never alone, call me, call the other support groups, email If you’re in town, you can come by and visit I’ve been invited to people’s homes before, there are support groups all over you can skype now They have meet-ups Where people who have this disorder or people who are interested in it Can go and learn It’s usually a weekend retreat So, things that I didn’t have, now they do have So you may feel alone, but you are never alone