Trimethylaminuria (Fish Odor Syndrome)

Hi, my name is bdazzle. I'm here because I want to connect with others that are in the TMAU community. I am the mom to a sweet, six year old boy with TMAU.

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Hi, my name is Lammienguyen. I'm here because

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Hi, my name is ColoradoNana6. I'm here because I know how difficult and isolating it is to live with TMAU. I am ready to be a support and be supported through dialogue about TMAU. Thanks!

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Hi, my name is KLL3. I'm here because
I know what it is to live with TMAU. #MightyTogether

Hello. My name is Shawn, recently I found out that I have this condition. For 15 years I thought it was due to improper hygienic methods. After years of coping with the condition with alcohol and drug abuse, I attempted to kill myself about seven times. By the grace of God I'm still alive today. God loves me but everyone else thinks I stink! I count my blessings that I have a family who loves me unconditionally and puts up with my stench. Mysteriously, with this condition, some people can smell me more than others, although everyone can smell me after I have been sweating profusely from exercise, work, or heat. This condition needs to be acknowledged by others. It is humbling to tell someone that you stink constantly because of a metabolic disorder, but it is better to let them know than offend them.#TrimethylaminuriaFishOdorSyndrome

Hi, my name is Suffering2002. I'm here because I need the feedback and guidance from others with this condition.

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Hello to all,

When my son was an infant we noticed an acrid urine type odor frequently. I consistently thought he must need a new diaper. I'd change dry diapers and wipe him down. After years Of noticing only perspiration a light clicked and I began my research. Eventually I found the late Dr. Pretti (Monell senses center in Philidelphia). He was kind enough to take emails and calls from both myself and my son's grandma; both of us had done the research and were very concerned and distraught imagining the future for our beautiful baby boy. He was amazing, reassuring and calming. Dr. Preti has since passed and my son is now 13 and dealing with looking highschool straight in the eyes. When he was 6 he got off the bus and had his winter jacket on backwards...hood over face. On our walk to the house I asked him what's going on and he said mom they said my breath smelled like shrimp. It doesn't! That is the day we had the talk. Very young I am aware however he needed to know why I tried to restrict his diet. At that time I had asked multiple pediatricians for genetic testing, one finally agreed and called letting me know my son did have the mutation... I know that if my armpits feel funky at work I become self conscious....I very much worry about my son going into highschool. We have tried riboflavin powder supplement to increase the processes still available within the system and try our best to avoid what seems to make it worse. Those foods include eggs, milk, beef, beans broccoli, potato. I am so afraid and my heart just breaks for the strength I know this child has. Being a young man he hides bad days and I know when he's had them by his avoidance. I want my son to have an amazing life and future and because this is so rare and only psychologically distressing there is little to no funding. Any help..in anyway is greatly appreciated. That all being said this is not a sob story. My son is a happy positive young man who understands as much about his condition as I do. He loves playing saxophone in jazz band and has friends in school and out. That doesn't take away his struggle though. All of my love to all of you!

Hi, my name is Sweetdreams_52. I've been diagnosed with TMAU foul body odor

#MightyTogether #Anxiety #Depression #Grief