Connect with us

Health

The girl who can’t smile: How a rare disorder became a young woman's ‘greatest gift’

Published

on

The girl who can’t smile: How a rare disorder became a young woman's ‘greatest gift’

Tayla Clement, 26, was born with a rare disorder that has made it impossible for her to smile — but she says she is grateful for it.

Born and raised in New Zealand, Clement has Moebius syndrome, a neurological disease that affects one child out of every 50,000 to 500,000 born, research shows.

Moebius occurs when a baby’s facial nerves are underdeveloped. The primary effects are facial paralysis and inhibited eye movement, but the condition can also cause difficulty with speech, swallowing and chewing, according to Johns Hopkins.

RARE CONDITION CAUSED PATIENT TO SEE ‘DEMONIC’ FACES, SAYS STUDY ON ‘VISUAL DISORDER’

“The syndrome affects my sixth and seventh cranial nerve, so it’s essentially like facial paralysis,” Clement told Fox News Digital in an interview.

Advertisement

It also means Clement can’t move her eyebrows or upper lip — and can’t shift her eyes from side to side.

Tayla Clement, born and raised in New Zealand, has Moebius syndrome, a neurological disease that affects one child out of every 50,000 to 500,000. (Tayla Clement)

Dr. Juliann Paolicchi, a pediatric neurologist and the director of pediatric epilepsy at Staten Island University Hospital in New York, has treated several babies with Moebius syndrome. (He was not involved in Clement’s care.)

“Infants born with the syndrome may have a lopsided face, may not be able to form a smile, and may have feeding problems early in life,” he told Fox News Digital. 

NEW JERSEY TWINS RECEIVE MATCHING HEART SURGERIES AFTER MARFAN SYNDROME DIAGNOSIS: ‘A BETTER LIFE’

Advertisement

They can also experience orthopedic anomalies, such as abnormal development of the fingers and feet.

“Other parts of the face and eyes may be affected, such as a small jaw, cleft palate and smaller-sized eyes,” Paolicchi added.

Tayla Clement

Growing up without the ability to smile brought plenty of challenges for Clement, who said she was bullied for years — “for as long as I can remember,” she told Fox News Digital.  (Tayla Clement)

While children with Moebius syndrome do not have problems with intellectual development, social situations can be a challenge due to a decreased ability to demonstrate emotions with the face, Paolicchi said. 

“They are often mistaken as being sad or overly serious, when they are simply just not able to smile,” he said. 

‘Quite isolating’

Growing up without the ability to smile brought plenty of challenges for Clement, she said.

Advertisement

She was born in 1997, before the advent of social media, so she wasn’t able to connect with others facing the same challenge.

“With the syndrome being super rare and also coming from a small country, it was quite isolating,” she said.

“As an 11-year-old girl, I thought, if I could just smile, I would have friends and wouldn’t get bullied anymore.”

Clement said she was bullied for years, “for as long as I can remember.”

“It started off as verbal bullying — being told that I was ugly or worthless, or being isolated and not having any friends.”

Advertisement
Tayla Clements

Clement is pictured at 11 years old after undergoing facial surgery, which was ultimately unsuccessful. (Tayla Clement)

Things got worse when Clement was 11, after she had a major operation in an attempt to correct her inability to smile.

During the “invasive” nine-hour surgery, doctors took tissue from her right thigh and inserted it internally into the corners of her mouth and into her temples. 

“The idea was that when I would clench down on my jaw, the tissue that was planted would pull the corners of my mouth up to mimic a normal smile,” she recalled to Fox News Digital. 

OHIO BOY, 8, PREPARES FOR BLINDNESS: ‘IT’S HEARTBREAKING,’ HIS MOM SAYS

Paolicchi confirmed that corrective surgery is sometimes performed on babies and children with Moebius syndrome.

Advertisement

“This is a complicated and specialized procedure.”

“The procedure, called the ‘smile’ surgery, helps not only appearance, but the ability to smile and to be able to pronounce words more clearly,” he said. 

“This procedure does involve transferring portions of the person’s own muscle to the face and connecting it to the working nerves of the face. This is a complicated and specialized procedure and should only be performed by surgeons skilled in the procedure.”

Tayla Clements

Clement is pictured soon after receiving major surgery at 11 years old. “The procedure, called the ‘smile’ surgery, helps not only appearance, but the ability to smile and to be able to pronounce words more clearly,” a doctor said.  (Tayla Clement)

The surgery does come with risks. Clement noted that there was a “very fine line” between tightening the area too much — which would leave her with a permanent smile — and leaving it too loose and not seeing any results at all.

“As an 11-year-old girl, I thought, if I could just smile, I would have friends and wouldn’t get bullied anymore. So I jumped at the opportunity,” she said.

Advertisement

“I just chose to believe in myself — and that I was destined for something bigger.”

The surgery was unsuccessful — leaving Clement scarred and “completely broken,” she said.

“It was such a horrible time for me,” she said. “But looking back on it now, I couldn’t be more grateful for the surgery being unsuccessful. I think it was all supposed to happen that way.”

Reaching a breaking point

After the operation, the bullying got worse. In addition to calling Clement names, students pushed her into lockers, ripped off her backpack and threw her items on the floor, she said.

“That came with a lot of mental health challenges,” she said. “For much of my childhood, I was quite depressed and anxious.”

Advertisement

While Clement’s family provided her with plenty of love and support — “they’re the reason why I’m still here,” she said — they didn’t know how bad things really were.

Tayla Clement with mom

While Clement’s family provided her with plenty of love and support — “they’re the reason why I’m still here,” she said — they didn’t know how bad things really were. Clement is pictured here with her mother. (Tayla Clement)

“When I was younger, I never told my parents about what I was going through with the bullying,” Clement said.

“There are still some things that I probably won’t ever tell them about, because I don’t want them to feel sad or upset,” she went on. “I know they would feel like they could have done something, but there’s nothing they could have done.”

In 2015, during her senior year of high school, Clement began collapsing and experiencing seizures. 

Tayla Clement

During her senior year of high school, Clement began collapsing and experiencing seizures. The next year, she was diagnosed with extreme clinical depression and anxiety, along with post-traumatic stress disorder. (Tayla Clement)

The next year, at 18, she was diagnosed with extreme clinical depression and anxiety, along with post-traumatic stress disorder, she said. 

Advertisement

“Because I had been through so much stress and trauma, my brain was kind of shutting down,” she said. “The seizures were like a physical form of how much I was struggling internally.”

OHIO MOTHER HOPES FOR A CURE TO SAVE HER SON, 8, FROM RARE, FATAL DISEASE: ‘GUT-WRENCHING’

At the time, doctors and specialists told Clement that she would have seizures for the rest of her life, and that she’d always be dependent on other people.

But she was determined to prove them wrong.

Intensive therapy played a big part in her recovery, she said.

Advertisement

After her diagnosis, Clement underwent intensive therapy, which she said played a big part in her recovery.

She found herself at a “crossroads,” she said, where she had to choose between working on her mental and physical health and putting herself into a better space, or continuing to feel “unhappy and miserable.”

Clement chose the first path — although it wasn’t easy.

“There were days when I just wanted to give up. I didn’t want to do life anymore because it was so hard,” she said.

In her role as a sports content creator and host, Clement has leveraged her love of rugby into a “new lease on life — a real purpose,” she said.

“I learned quite quickly that the only person who can truly help you is yourself.”

Advertisement

Clement “worked tirelessly,” continuing with therapy, reading many self-help books and adopting healthy daily routines. 

“I just chose to believe in myself — and that I was destined for something bigger,” she said.

Saved by a new passion

As it turned out, the “something bigger” was a new career in sports. 

Clement had always been a big sports fan — with a particular love of rugby, which is very popular in New Zealand.

In March 2023, she started creating social media content around rugby and motorsports. The Chiefs, a professional rugby union team in New Zealand, gave Clement her first opportunity.

Advertisement
Tayla Clements

Since entering the rugby scene, Clement has worked to “bring inclusion” into the sport, with a goal of “inspiring, empowering and advocating for positive change.” (Tayla Clement)

This year, Clement interviewed players from four of the Super Rugby Pacific teams, including some of the best players in the world, such as two-time World Rugby Player of the Year Beauden Barrett.

In her role as a sports content creator and host, Clement said she’s leveraged her love of rugby into a “new lease on life — a real purpose.”

Since entering the rugby scene, she has worked to “bring inclusion” into the sport, with a goal of “inspiring, empowering and advocating for positive change.”

PENNSYLVANIA PARENTS HONOR THEIR DAUGHTER WHO DIED OF A RARE GENETIC DISEASE: ‘SWEETEST GIRL IN THE WORLD’

Clement is also aiming, she said, to help other sports organizations incorporate more inclusion into their teams.

Advertisement

“I’ve known from a young age that I’m meant to help people,” Clement told Fox News Digital. “Using my story and my voice to advocate for others and make the sports arena more inclusive makes me so happy. And I’m just getting started.”

‘Grateful for all of it’

It has been three years since Clement experienced a collapse or seizure, she told Fox News Digital.

“I’m living a life I truly never could have dreamed of,” she said. “I’m doing a job that I absolutely love, and I just did not think this level of happiness and contentment was accessible or attainable for me … It’s been a long journey, and I’m very grateful for all of it.”

Tayla Clement

This year, Clement has interviewed players from four of the Super Rugby Pacific teams, including some of the best players in the world. (Tayla Clement)

Clement has also used her platform to connect with other people who have syndromes or disabilities. Her mission is to educate others about how to treat younger people who feel like they are “not seen or heard” — whether that’s in the sports arena or everyday life.

CLICK HERE TO SIGN UP FOR OUR HEALTH NEWSLETTER

Advertisement

“I really needed someone like my present self when I was younger,” she said. “It’s a full-circle moment to be there for other people now.”

Despite the “dark times” she’s experienced, Clement said that being born with Moebius syndrome and not being able to smile has turned out to be “the greatest gift.”

Tayla Clement

Clement said she aims to help other sports organizations incorporate more inclusion into their teams. “I’ve known from a young age that I’m meant to help people,” she said. (Tayla Clement)

“We’re all born different and unique,” she said. “It has given me the opportunity to use my voice and to be proud of my differences.”

“Being alive is such a gift, and it’s a special thing to be born with Moebius syndrome. It doesn’t make us any less worthy, beautiful or amazing.”

Advertisement

Even though she can’t smile in the traditional sense, Clement says she has her own version.

“I think everyone’s smile is different, just like everyone else is different,” she said. 

“I just smile in my own way.”

For more Health articles, visit www.foxnews.com/health.

Advertisement
Continue Reading
Advertisement
Click to comment

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Health

Cancer Remission Like Catherine’s Does Not Always Mean the Illness Is Cured

Published

on

Cancer Remission Like Catherine’s Does Not Always Mean the Illness Is Cured

Princess Catherine, wife of Prince William, reported on Tuesday that her cancer was in remission. But what does it mean to be in remission from cancer?

Doctors discovered her cancer unexpectedly last March when she had abdominal surgery. She has not revealed the type of cancer she has, nor how advanced it was when it was discovered.

But she did say she had chemotherapy, which she said had been completed in September. She told the British news agency PA Media that she had a port, a small device that is implanted under the skin and attached to a catheter that goes into a large vein. It allows medicines like chemotherapy drugs to be delivered directly to veins in the chest, avoiding needle sticks.

Catherine told PA Media that chemotherapy was “really tough.”

“It is a relief to now be in remission and I remain focused on recovery,” she wrote on Instagram.

Advertisement

Her announcement “certainly is good news and is reassuring,” said Dr. Kimmie Ng, associate chief of the division of gastrointestinal oncology at the Dana-Farber Cancer Institute in Boston.

But cancer experts like Dr. Ng say that the meaning of remission in a patient can vary.

In general, when doctors and patients talk about remission, they mean there is no evidence of cancer in blood tests or scans.

The problem is that a complete remission does not mean the cancer is gone. Even when a cancer is “cured” — defined as no evidence of cancer for five years — it may not be vanquished.

That makes life emotionally difficult for patients, who have to have frequent visits with oncologists for physical exams, blood tests and imaging.

Advertisement

“It’s really scary,” Dr. Ng said. “The amount of uncertainty is very very hard,” she added.

But that ongoing surveillance is necessary, despite the toll it takes on patients.

“Different cancers have different propensities of returning or not returning,” said Dr. Elena Ratner, a gynecologic oncologist at the Yale Cancer Center.

As many as 75 to 80 percent of ovarian cancers, she noted, can come back in an average of 14 to 16 months after a remission, depending on the stage the cancer had reached when it was found and on the cancer’s biology.

“Once the cancer returns, it becomes a chronic disease,” Dr. Ratner said. She tells her patients: “You will live with this cancer. You will be on and off chemotherapy for the rest of your life.”

Advertisement

Dr. Ratner’s gynecological cancer patients have to come back every three months for CT scans to keep an eye out for evidence that the cancer has returned.

“The women live CT scan to CT scan,” she said. “They say that for two and a half months, they have a wonderful life, but then, in time for the next CT scan, the fear returns.”

“It costs them — it costs them a lot,” she said.

“It’s awful, yet I am amazed every day by their strength,” she said of her patients.

Advertisement
Continue Reading

Health

Death Toll in Gaza Likely 40 Percent Higher Than Reported, Researchers Say

Published

on

Death Toll in Gaza Likely 40 Percent Higher Than Reported, Researchers Say

Deaths from bombs and other traumatic injuries during the first nine months of the war in Gaza may have been underestimated by more than 40 percent, according to a new analysis published in The Lancet.

The peer-reviewed statistical analysis, led by epidemiologists at the London School of Hygiene and Tropical Medicine, used modeling in an effort to provide an objective third-party estimate of casualties. The United Nations has relied on the figure from the Hamas-led Ministry of Health, which it says has been largely accurate, but which Israel criticizes as inflated.

But the new analysis suggests the Hamas health ministry tally is a significant undercount. The researchers concluded that the death toll from Israel’s aerial bombardment and military ground operation in Gaza between October 2023 and the end of June 2024 was about 64,300, rather than the 37,900 reported by the Palestinian Ministry of Health.

The estimate in the analysis corresponds to 2.9 percent of Gaza’s prewar population having been killed by traumatic injury, or one in 35 inhabitants. The analysis did not account for other war-related casualties such as deaths from malnutrition, water-borne illness or the breakdown of the health system as the conflict progressed.

The study found that 59 percent of the dead were women, children and people over the age of 65. It did not establish what share of the reported dead were combatants.

Advertisement

Mike Spagat, an expert on calculating casualties of war who was not involved in this research, said the new analysis convinced him that Gaza casualties were underestimated.

“This is a good piece of evidence that the real number is higher, probably substantially higher, than the Ministry of Health’s official numbers, higher than I had been thinking over the last few months,” said Dr. Spagat, who is a professor at Royal Holloway College at the University of London.

But the presentation of precise figures, such as a 41 percent underreported mortality, is less useful, he said, since the analysis actually shows the real total could be less than, or substantially more. “Quantitatively, it’s a lot more uncertain than I think comes out in the paper,” Dr. Spagat said.

The researchers said their estimate of 64,260 deaths from traumatic injury has a “confidence interval” between 55,298 and 78,525, which means the actual number of casualties is likely in that range.

If the estimated level of underreporting of deaths through June 2024 is extrapolated out to October 2024, the total Gazan casualty figure in the first year of the war would exceed 70,000.

Advertisement

“There is an importance to war injury deaths, because it speaks to the question of whether the campaign is proportional, whether it is, in fact, the case that sufficient provisions are made to to avoid civilian casualties,” said Francesco Checchi, an epidemiologist with an expertise in conflict and humanitarian crises and a professor at the London School of Hygiene and Tropical Medicine who was an author on the study. “I do think memorializing is important. There is inherent value in just trying to come up with the right number.”

The analysis uses a statistical method called capture-recapture analysis, which has been used to estimate casualties in other conflicts, including civil wars in Colombia and Sudan.

For Gaza, the researchers drew on three lists: The first is a register maintained by the Palestinian Ministry of Health, which mainly comprises the dead in hospital morgues and estimates of the number of unrecovered people buried in rubble. The second is deaths reported by family or community members through an online survey form the ministry established on Jan. 1, 2024, when the prewar death registration system had broken down. It asked Palestinians inside and outside Gaza to provide names, ages, national ID number and location of death for casualties. The third source was obituaries of people who died from injuries that were published on social media, which may not include all of the same biographical details and which the researchers compiled by hand.

The researchers analyzed these sources to look for individuals who appear on multiple lists of those killed. A high level of overlap would have suggested that few deaths were uncounted; the low amount they found suggested the opposite. The researchers used models to calculate the probability of each individual appearing on any of the three lists.

“Models enable us to actually estimate the number of people who have not been listed at all,” Dr. Checchi said. That, combined with the listed number, gave the analysts their total.

Advertisement

Patrick Ball, director of research at the Human Rights Data Analysis Group, and a statistician who has conducted similar estimates of violent deaths in conflicts in other regions, said the study was strong and well reasoned. But he cautioned that the authors may have underestimated the amount of uncertainty caused by the ongoing conflict.

The authors used different variations of mathematical models in their calculations, but Dr. Ball said that rather than presenting a single figure — 64,260 deaths — as the estimate, it may have been more appropriate to present the number of deaths as a range from 47,457 to 88,332 deaths, a span that encompasses all of the estimates produced by modeling the overlap among the three lists.

“It’s really hard to do this kind of thing in the middle of a conflict,” Dr. Ball said. “It takes time, and it takes access. I think you could say the range is larger, and that would be plausible.”

While Gaza had a strong death registration process before the war, it now has only limited function after the destruction of much of the health system. Deaths are uncounted when whole families are killed simultaneously, leaving no one to report, or when an unknown number of people die in the collapse of a large building; Gazans are increasingly buried near their homes without passing through a morgue, Dr. Checchi said.

The authors of the study acknowledged that some of those assumed dead may in fact be missing, most likely taken as prisoners in Israel.

Advertisement

Roni Caryn Rabin and Lauren Leatherby contributed reporting.

Continue Reading

Health

Dementia risk for people 55 and older has doubled, new study finds

Published

on

Dementia risk for people 55 and older has doubled, new study finds

Dementia cases in the U.S. are expected to double by 2060, with an estimated one million people diagnosed per year, according to a new study led by Johns Hopkins University and other institutions.

Researchers found that Americans’ risk of developing dementia after age 55 is 42%, double the risk that has been identified in prior studies, a press release stated.

For those who reach 75 years of age, the lifetime risk exceeds 50%, the study found.

AGING ‘HOTSPOT’ FOUND IN BRAIN, RESEARCHERS SAY: ‘MAJOR CHANGES’

Women face a 48% average risk and men have a 35% risk, with the discrepancy attributed to women living longer than men.

Advertisement

Dementia cases in the U.S. are expected to double by 2060, with an estimated one million people diagnosed per year. (iStock)

The study, which was published in the journal Nature Medicine on Jan. 13, analyzed data from the Atherosclerosis Risk in Communities Neurocognitive Study (ARIC-NCS), which has tracked the cognitive and vascular health of nearly 16,000 adults since 1987.

DEEP SLEEP CAN KEEP TWO BIG HEALTH PROBLEMS AT BAY, NEW STUDIES SUGGEST

“Our study results forecast a dramatic rise in the burden from dementia in the United States over the coming decades, with one in two Americans expected to experience cognitive difficulties after age 55,” said study senior investigator and epidemiologist Josef Coresh, MD, PhD, who serves as the founding director of the Optimal Aging Institute at NYU Langone, in the release.

Understanding risk factors

“One of the main reasons for the increase is that great medicine and tecnological advances are keeping us alive longer and age is a risk factor for dementia,” Dr. Marc Siegel, clinical professor of medicine at NYU Langone Health and Fox News senior medical analyst, told Fox News Digital.

Advertisement

“Obesity is associated with inflammation, diabetes and high blood pressure, which are all independent risk factors for dementia.”

In addition to aging, other risk factors include genetics, obesity, hypertension, diabetes, unhealthy diets of ultraprocessed foods, sedentary lifestyles and mental health disorders, the release said.

“We have an obesity epidemic with over 45% adults obese in the U.S.,” Siegel noted. “Obesity is associated with inflammation, diabetes and high blood pressure, which are all independent risk factors for dementia.”

      

“And as an unhealthy population, we also have more heart disease, and atrial fibrillation is a risk factor for cognitive decline,” he added.

Advertisement

Dementia risk was found to be higher among people who have a variant of the APOE4 gene, which has been linked to late-onset Alzheimer’s disease. Black adults also have a higher risk.

virtual volumetric drawing of brain in hand

Researchers found that Americans’ risk of developing dementia after age 55 is 42%, double the risk that has been identified in prior studies. (iStock)

Research has shown that the same interventions used to prevent heart disease risk could also prevent or slow down dementia, the study suggested.

“The pending population boom in dementia cases poses significant challenges for health policymakers in particular, who must refocus their efforts on strategies to minimize the severity of dementia cases, as well as plans to provide more health care services for those with dementia,” said Coresh.

CLICK HERE TO SIGN UP FOR OUR HEALTH NEWSLETTER

What needs to change?

Professor Adrian Owen, PhD, neuroscientist and chief scientific officer at Creyos, a Canada-based company that specializes in cognitive assessment and brain health, referred to the increase in dementia cases as a “tidal wave.”

Advertisement

“This new study’s anticipated surge in dementia cases underscores the urgent need for early and accurate detection,” he told Fox News Digital.

“By catching issues early, we give people the power to make lifestyle adjustments, seek available treatments and plan their futures with clarity.”

“By identifying cognitive decline at its earliest stages, we have an opportunity to intervene before patients and families bear the full weight of the disease.”

Owen recommends conducting regular cognitive assessments as part of routine check-ups to proactively identify early signs of cognitive decline.

“By catching issues early, we give people the power to make lifestyle adjustments, seek available treatments and plan their futures with clarity,” he said.

Advertisement
Man with doctor

“By identifying cognitive decline at its earliest stages, we have an opportunity to intervene before patients and families bear the full weight of the disease.” (iStock)

Maria C. Carrillo, PhD, chief science officer and medical affairs lead for the Alzheimer’s Association in Chicago, said there is an “urgent need” to address the global crisis of Alzheimer’s disease and dementia. 

To help keep the aging brain healthy, the Alzheimer’s Association published its report 10 Healthy Habits for Your Brain. Some of the tips are listed below.

For more Health articles, visit www.foxnews.com/health

– Participate in regular physical activity.

– Learn new things throughout your life and engage your brain.

Advertisement

– Get proper nutrition — prioritize vegetables and leaner meats/proteins, along with foods that are less processed and lower in fat.

– Avoid head injury (protect your head).

– Have a healthy heart and cardiovascular system — control blood pressure, avoid diabetes or treat it if you have it, manage your weight and don’t smoke.

Man with Alzheimer's

Research has shown that the same interventions used to prevent heart disease risk could also prevent or slow down dementia. (iStock)

The research was funded by the National Institutes of Health.

Fox News Digital reached out to the researchers for additional comment.

Advertisement

Continue Reading

Trending