March 29, 2024

Woman with rare disorder that makes her smell like FISH

A woman living with a rare condition that makes her smell like fish has spoken for the first time about living with a constant ‘tuna’ odor.

Connie Christy, 43, from Sheridan, Indiana has trimethylaminuria, a genetic disorder that causes sufferers to omit a pungent scent that affects the breath, sweat and urine.

The mother-of-two says she will ‘reek to high heaven’ within 30 minutes of eating certain foods including fish and eggs because her body is unable to break them down.

The teacher cannot detect the smell herself so must rely on her husband Shane Christy, 44, sons Drake, 19 and Jace, 16, or friends to let her know if they notice.

Connie Christy, a mother with an extremely rare condition that makes her smell like fish has finally found relief after years of being humiliated by the odor

Connie Christy, a mother with an extremely rare condition that makes her smell like fish has finally found relief after years of being humiliated by the odor

The teacher cannot detect the smell herself so must rely on her husband Shane (second left), sons Drake, 19 (left) and Jace, 16 (right), or friends to let her know if they notice.

The teacher cannot detect the smell herself so must rely on her husband Shane (second left), sons Drake, 19 (left) and Jace, 16 (right), or friends to let her know if they notice.

During her school years, classmates called her ‘Connie the Tuna’ but she had no idea she had the condition until the age of 19 when her parents sat her down and broke the news.

Despite showering daily, brushing her teeth and spraying perfume, Connie was unable to mask the odor until she started taking probiotic tablets three years ago.

Speaking publicly about her ordeal for the first time, the special education teacher said: ‘I know I’m a very hygienic person and I know it is not because of not being that way.

‘I do take care of myself but it’s something that I can’t control. It’s always in the back of my mind; I’m wondering whether I smell.

‘I have always been a social person but it has prevented me from doing certain things.

What istrimethylaminuria?

Trimethylaminuria – nicknamed ‘fish odour syndrome’ – is a condition is caused by an enzyme missing which causes a strong odour in sweat, urine and breath – usually described as like rotting fish, faeces or rubbish.

It is created when the body is unable to break down the smelly chemical trimethylamine (TMAU) that is produced in the gut when certain foods, such as dairy, coffee, meat and fish, are digested.

This leaves them with an excess of trimethylamine, which is then released through their sweat, urine and breat, causing the unpleasant odour.

While there are treatments that can help mask the symptoms, there is currently no known cure.

During her school years, classmates called her 'Connie the Tuna' but she had no idea she had the condition until the age of 19 when her parents sat her down and broke the news

During her school years, classmates called her ‘Connie the Tuna’ but she had no idea she had the condition until the age of 19 when her parents sat her down and broke the news

Connie with husband Shane. ÂDespite showering daily, brushing her teeth and spraying perfume, Connie was unable to mask the odor until she started taking probiotic tablets three years ago

Connie with husband Shane. Despite showering daily, brushing her teeth and spraying perfume, Connie was unable to mask the odor until she started taking probiotic tablets three years ago

Relief at last:ÂIt wasn't until Connie discovered probiotic digestion aids Plexus ProBio5 and Biocleanse (pictured) that her symptoms subsided

Relief at last:It wasn’t until Connie discovered probiotic digestion aids Plexus ProBio5 and Biocleanse (pictured) that her symptoms subsided

‘My husband and I were taking ballroom dance classes and I quit doing that because once in a while my husband would say, “Oh, you’re starting to smell. . ”

‘Quite often the instructor would dance with me and
show me the moves and it made me sick to the stomach that I might smell. I was so fearful I just quit.

‘When it happened at work my friend texted me and said, “Hey, so and so said she smelt fish and I just wanted to let you know”.

‘I just wept. I didn’t want people to sit and wonder, “Does she take showers? ” I do. I’m very clean.

‘When my husband tells me I will take a shower right away and try to wash it away but it doesn’t always work.

Connie (pictured with Shane) recalls how her husband took her out ballroom dancing, but she was forced to stop after he told her: ‘Oh, you’re starting to smell’

Short-term solution: ‘When my husband tells me I will take a shower right away and try to wash it away but it doesn’t always work,’ says Connie

During Connie’s school years, classmates called her ‘Connie the Tuna’ but she had no idea she had the condition until the age of 19 when her parents sat her down and broke the news

‘I have tried charcoal wash and I have tried zinc and I would always use body spray or fragrance to try and cover it up, but there is no covering it up.

‘It makes me feel embarrassed and ashamed. Who wants to smell like that? ’

Connie was diagnosed with trimethylaminuria after her parents noticed certain foods caused her to omit an unpleasant body odour when she was a child.

The condition is caused by a mutation in the FM03 gene, which helps break down trimethylamine. Without it, the compound builds up, causing a fish-like odor.

Connie’s parents spoke with a nurse who explained the condition and when she turned 19 they sat her down and broke the news.

She said: ‘I can’t smell it on myself so it was a shock to me. All through high school and middle school, how many times did I actually smell like fish and not know it?

Connie (pictured at her son Jace's high school graduation) was diagnosed with trimethylaminuria after her parents noticed certain foods caused her to omit an unpleasant body odour when she was a child

Connie (pictured at her son Jace’s high school graduation) was diagnosed with trimethylaminuria after her parents noticed certain foods caused her to omit an unpleasant body odour when she was a child

Connie knew the treatment had worked when her son sniffed her and said: ‘Mum, I don’t smell anything’ – causing her to break down in tears of joy

‘Through elementary I don’t remember kids being mean by my mom does remember me being called names like Connie the Tuna.

‘When I was older no one really said anything but it kind of makes sense, given how people acted towards me, like backing away or avoidance.

‘I was just thinking bad breath or something like that so it was a blow. I did struggle and was in tears at times, especially when there was intimacy.

‘I met my husband around that time and when we were dating, every once in a while he would say, “Did you shower today? ” and it was me smelling like fish.

‘He brought it up a couple of times. We were together for six months to a year and I was nervous about telling him. ’

For decades the smell would occur a few times a month, but when Connie hit her late thirties it became more frequent and she began desperately a treatment.

Torment: For decades the smell would occur a few times a month, but when Connie hit her late thirties it became more frequent and she began desperately a treatment

Speaking about the breakthrough treatment, Connie said: ‘I have so much more confidence to talk to people now. I have more confidence to share my story’

It wasn’t until she discovered probiotic digestion aids Plexus ProBio5 and Biocleanse that her symptoms subsided.

She’s been taking three tablets a day for three years and has only smelled like fish three times since then.

Connie said: ‘Now I can eat pretty much anything and the test was crab legs.

‘I love crab legs and when we used to eat them my husband says I reeked – I would smell to high heaven in 30 minutes. It’s a fill-up-the-kitchen smell.

‘It comes through my breath. Even if I eat broccoli my breath will still smell of fish.

‘After about four months of these products I ate crab legs and after 15 or 20 minutes I asked my husband if I smelled and he said no.

Connie has been taking three tablets a day for three years and has only smelled like fish three times since then

‘Later my son buried his nose in my neck and said “Mum, I don’t smell anything”. I cried.

‘It’s not a cure and if I stopped taking them I would still smell of fish but it has changed everything.

‘I have so much more confidence to talk to people now. I have more confidence to share my story. ’

Shane, a self-employed property developer, said: ‘Connie is not a dirty person but it would be a really fishy smell.

‘It would smell like fish – like if you were catching fish and you pulled one out of the water. It’s a strong, distinct smell.

‘It was hard to see her dealing with it because she was never aware of when it was happening.

‘It was never something that bothered me but I knew it made her feel bad. She’s so much happier now. ’

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