Fish odor syndrome-tmau

The story of shaz

I suffer a rare disease called tmau fish odor syndrome. Trimethylaminuria is an uncommon genetic disorder that causes a strong body odour usually described as like rotting fish, faeces or garbage. The odour is created when the body is not able to break down trimethylamine. This is a smelly chemical that is produced in the gut particularly when certain protein and choline-rich foods are digested. There is no cure or a proper treatment. 

At the age of 9, kids started to give me nicknames like Smelly, Stink Bomb, Tramp, Fishy and Skunk. I would think it’s not me some kids are just being mean. As the years passed by name calling continued. In class, the group works would be the worst because kids would push one another so that they don’t have to sit next me. One of my friends threw one of them slumber parties and that was my first and last till date. My friend’s dad couldn’t stand the smell so he kicked me out of their house but because I was only young I didn’t know any better and I was standing outside her house for good few hours thinking they would let me back in again but they didn’t and eventually my mum came and took me home. Every day after school I had to go to religious study classes and again bullying started to continue. The class room was segregated for boys and girls but because of the bullying the teacher moved me to the boys side and I was happy with that because my two brothers was there so I could sit next to them. But it all changed when the teacher humiliated me front of the whole class saying did you pooh in your pants and the boys were all pinching their noises and ever since then I refused to go back to that class. 
In college, I thought things would be different because I started to shower every day, started to buy and wear lot of different perfumes and body spray and still it made no difference, the teacher started to spray the room. I would go home every day in tears and crying to bed. Somehow I managed to finished college with poor grades because no teachers would offer me the help that I need because of my odour. Uni started and I was determined to change things around. I went to the doctors with my problem and he said that I should use better deodorants and gave me some gas relieve pills so I thought ok this could be it. First day of uni, I showed for 2 hours, wore new outfits, sprayed perfumes all over, and looked really nice and presentable, did that change anything… did it heck. As soon as some guy sat next to me, 10 minutes later he moved and sat somewhere else. I managed to get myself a part time job and the supervisor would have regular meetings saying please maintain a good hygiene and she would look straight at me whilst saying this. I wanted answers as to why this was happening to me so I goggled for all the possible reasons that it could be and took the list to my new GP. She could see how upset I was so she was willing to listen and that’s when I found out that I had this disease with no cure or medicine to treat the problem. The only way out is to control your diet and if you knew what we could eat you would be shocked that’s how limited it is and still the smell won’t go away. I finished uni and started my new job and they would open the windows and spray the room. People can sometimes forget that people like me also have a heart and their actions can really hurt. I guess it’s not their fault, I would probably react the same if it was the other way round. I’ve noticed it helps if I don’t eat anything till I finish work which is 5pm but I do get dizzy and lack in energy. They still open the windows but at least now they don’t spray the room as much. I still cry and pray for a cure and I truly believe my prayers will be answered soon well I wish anyway.

I wish there was some kind of cure or medicine so that I could dream of a normal life. I’m 25 and almost 26 and never had a partner. I wish this was treated properly so that I can eat normally without having to think how my body would react to this. I do crave lot of foods that I cannot have e.g. milk, desserts, meat, liver, sea food, beans, nuts, eggs, vegetables like cabbage and cornflower and so on. I wish I can get cured so that I can meet someone. I wish I can get cured so that I can have kids and knowing that they won’t go through what I went through. I wish there was a cure. Thank you for reading my story.

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