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Woman left showering four times a day due to rare condition that leaves her smelling like fish

Awoman who was diagnosed with one of the world's rarest conditions which leaves her smelling "fishy", said she uses an entire can of deodorant in order to mask her body odour.

Kelly-Fidoe-White first became aware that something was wrong when she was around six years old and noticed her pee smelled like fish. She then began to develop a strong body odour when she went through puberty and decades of name-calling followed.

The senior night radiographer from Oldham was told she had Trimethylaminuria (TMAU) which is also known as "fish-odour syndrome" in 2015. The condition is so uncommon, it has only been recorded 100 in medical records but doctors believe the real figures might be a lot higher.

Read more: Yorkshire GP patients miss 1.1 million appointments in a year as doctors left waiting

Before her diagnosis, she often showered several times a day to try and curb the smell, not realising that this would only make matters worse. Kelly, 41, said the condition has caused her mental health to deteriorate and she would often stay at home in fear of other people noticing her scent, the Manchester Evening News reports.

"People call it a curse, and I can see why. To sum it up in two words, it's confusing and isolating," Kelly told NeedToKnow.online.

"Confusing because people generally don’t like to confront body odour issues head-on so when you ask them outright they tend to tell you they don’t smell anything, but unfortunately you will then get the odd person who talks about it behind your back, rather than dealing with you face-to-face.

"As a healthcare professional, to be asked if you know you should be using soap when you wash, is really upsetting."

Over the years, she's tried to find ways to cope with the condition such as by changing her work uniform twice a day and using whole cans of deodorant to cover her scent. Unfortunately, other people who are unaware of Kelly's struggles often believe it is down to bad hygiene.

Kelly said: "It has absolutely nothing to do with personal hygiene. I could wash every hour of every day and it would only be a short term fix. In fact, it is common for sufferers to smell worse after a shower because the pores open more due to the warm water.

"It's isolating because you don’t want to offend people with the smell so you are constantly thinking, 'Am I sweaty? Am I over-warm? That person is coughing, is that because of me?' If you let it, the condition can begin to take over your thoughts.

"I developed severe hyper-vigilance over people’s reactions to the smell. The worst part is feeling like you're going crazy from it."

Some trolls also body shamed Kelly by saying the scent was due to her weight and at one point, her mum was forced to visit her work with a fresh pair of clothes after someone complained to management about her smell.

She said: "It has nothing to do with weight, which was thrown at me a lot. In fact, my smell was worst when I was at my lightest."

In a bid to improve her body odour, Kelly also changed her diet and cut out choline rich foods such as liver, kidney, beans, peanuts and cruciferous vegetables. However, this in turn leaves her with low choline levels which can contribute to the risk of developing neurological conditions such as fibromyalgia and Parkinson's disease.

She said: "The whole condition is counter-intuitive in its treatment because your first thought is that it is BO [body odour]. So you wash more, use stronger soaps, wash your clothes using soda crystals etc etc., apply more perfume and body spray – all of which makes it worse.

"I ultimately learned that the skin needs to remain at its natural pH of 5.5 as acid breaks down TMAU as it comes through the skin – soaps, bleach and soda crystals are generally alkali."

Sadly, there is no cure for TMAU, leaving those living with the condition with little option other than cutting out certain foods and supplementing specific nutrient levels. Kelly also signed up for therapy and counselling to deal with the decades of bullying she was subjected to.

"Currently I believe I am relatively symptom-free. This is due to a combination of supplements scientifically selected to reduce TMA production and boost TMA oxidisation and some lifestyle modifications," she said.

"It’s difficult because once you are labelled as someone with a BO problem some people do use it as a stick to beat you with if they don’t like you. I want to give a voice to my fellow sufferers, who suffer in silence because of the stigma attached to BO."

She added: "People are generally scared to speak up for fear of being ridiculed. Unfortunately when people do it can be difficult to get specialist treatment as the smell is often intermittent and GPs tend to not refer based on the individuals testimony alone.

"I have found a community online, which is substantial." 

Reference: Yorkshire Live: Olive Loveridge-Greene & Sophie Halle-Richards & Victoria Schee

Arthritis drug regrows hair lost to ‘devastating’ alopecia

Acommon arthritis drug has been approved in the US for people with alopecia after it was found to completely regrow hair in half of patients after just one year.

The drug baricitinib, which is also used to treat Covid-19, works by blocking the immune system from attacking follicles, allowing the hair to grow back.

On Monday, the Food and Drug Administration (FDA) approved the drug for the treatment of alopecia areata, a skin disease which brings rapid loss of scalp hair, and sometimes eyebrows and eyelashes.

It follows successful trial results which showed 40 per cent who took the drug had complete or near-complete hair regrowth after 36 weeks, and after a year, nearly half of the patients had all their hair back, making it the first treatment for the condition.

Approximately 400,000 people in Britain have either have alopecia areata or have had it in the past. While some only have a few small patches on the head, others can lose all their body hair within just a few weeks.

The drug company Eli Lilly has applied for approval in the EU. It is also planning to do so in the UK. 

Results of clinical trials ‘remarkable’

“People with alopecia areata, dermatologists and other healthcare providers have been looking forward to this day when there is an FDA-approved systemic medicine for this often-devastating disease,” said Dr Brett King, professor of dermatology at Yale School of Medicine and lead trial investigator.

“Alopecia areata causes unpredictable hair loss that can be patchy or complete, and it affects people of all ages and ethnicities.

“I am so happy that adults with severe alopecia areata can now take a once-daily pill. The results of clinical trials are remarkable.”

Hair-loss charities said the decision was a “milestone” in the treatment of alopecia.

Nicole Friedland, president and chief executive officer of the National Alopecia Areata Foundation (NAAF), said: “Alopecia areata patients face significant challenges every day including limited public knowledge about the disease, a lack of treatment options and social stigma.

“The approval can spark hope for many patients and encourage new treatment conversations with their doctors.” 

Reference: The telegraph: Sarah Knapton

Woman first to die from rare Powassan virus in Connecticut

AConnecticut woman has died of the Powassan virus, a rare tick-borne disease, the Connecticut Department of Public Health (DPH) reported Tuesday evening.

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The woman, between the ages of 90 to 99, was the first person in the state to die from the rare Powassan virus this season, an illness that is typically transmitted to humans when an infected deer tick, groundhog tick or squirrel tick bites a person and passes it onto them.

The woman came down with the illness in early May and was later admitted to hospital with symptoms that included a headache, an altered mental status, fever, nausea, chills and chest pain. She died on 17 May after her condition worsened, the DPH said.

According to the state’s health agency, the 90-year-old had a known tick bite, but it had been removed two weeks before she came down with the illness.

This recent case marks the second resident in the state to test positive for the rare virus.

In March, a Connecticut man from Windham County between the ages of 50 and 59 tested positive for the virus.

Though it’s an uncommon virus to contract, before 2015 its presence was even more scarce as across the country, authorities had only recorded 10 cases per year between 2011 and 2014.

Within Connecticut, the health authority has documented a dozen cases between 2017 and 2021 and of those people, two were fatal.

Most people who contract the virus will face little to no symptoms, state health officials said. One in 10 severe cases are fatal and approximately half of severe cases lead to longterm health problems, the DPH said

Symptoms that people who have recently been bit by a tick should monitor for include fever, headache, vomiting and weakness. If there’s reason to believe that a person has developed one of the more severe diseases (encephalitis or meningitis), then you should additionally monitor for confusion, difficulty speaking, seizures and loss of coordination, according to the Centers for Disease Control and Prevention.

DPH Commissioner Manisha Juthani cautioned that the most recent death from Powassan virus marks the need “take actions to prevent tick bites from now through the late fall”.

“Using insect repellant, avoiding areas where ticks are likely, and checking carefully for ticks after being outside can reduce the chance of you or your children being infected with this virus,” Dr Juthani said in a DPH release.

The fatal Connecticut case follows the death of a man in Maine who contracted the same rare virus from a tick bite. The Maine Center for Disease Control and Prevention reported the death of an adult-aged man from Waldo County in April, after they said he developed neurological symptoms while being treated in hospital.

The agency noted these severe symptoms can occur in 10 per cent of people who contract the disease from infection.

Reference: Independent: Johanna Chisholm

Expert has say on Justin Bieber's facial paralysis

An expert has suggested Justin Bieber could be left with paralysis in his face "long-term". On Friday, the 28-year-old singer revealed he had been diagnosed with Ramsay Hunt syndrome, which saw his face become "fully" paralysed down the right side after a rare virus attacked the nerves in his ear.

 

Provided by Hull LiveExpert has say on Justin Bieber's facial paralysis

He took to Instagram to tell fans he has had to to cancel his upcoming tour dates because of the sudden condition. "Been getting progressively harder to eat which has been extremely frustrating. Please pray for me," he added.

Following Justin's announcement, an expert in neurological rehabilitation at Oxford Brookes University has suggested that the star could have "long-term" effects from the condition. Although most people recover fully, Justin appears to have a "serious case of the virus", according to Professor Derick Wade in the Mirror.

"How well will it recover? He's already told you the answer to that," he added.

Speaking to his Instagram fans on Friday, Justin said that his diagnosis feels "serious". "It is from this virus that attacks the nerve in my ear in my facial nerves and has caused my face to have paralysis," he said.

"As you can see, this eye is not blinking. I can't smile on this side of my face.

"This nostril will not move, so there's full paralysis on this side of my face. It's pretty serious.

"I wish this wasn't the case but obviously my body's telling me I gotta slow down. We don't know how much time it is going to be but it's going to be OK," he added.

In the video, Justin attempted to smile, blink and move his face but one side remained still as he continued to speak. “So for those who are frustrated by my cancellations of the next shows, I'm just physically, obviously not able of doing them.

"I hope you guys understand, and I'll be using this time to just rest and relax and get back to 100% so I can do what I was born to do. But in the meantime, this ain't it."

Since revealing his diagnosis, Bieber has received an outpouring of love for his honesty from celebrity friends including DJ Khaled, Romeo Beckham and his wife Hailey Bieber who wrote: "I love you baby."

Reference: Hull Live: Susan Knox & Michael Broomhead