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Rare disease diagnosis strengthens bond between twin sisters: ‘Doing our best’

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Rare disease diagnosis strengthens bond between twin sisters: ‘Doing our best’

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As twins and best friends, Natalie and Monica Rex had spent their entire lives together — and were looking forward to continuing those shared experiences into adulthood.

But right before college graduation eight years ago, the twins — now 30 — were shocked to discover that Natalie has Friedreich’s ataxia (FA), a rare, genetic and usually fatal neurological disease that affects only 6,000 people in the U.S.

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The sisters joined Fox News Digital for an on-camera interview about how the little-known disease has changed their lives — and further strengthened their unbreakable bond. (See the video at the top of this article.)

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Natalie was nearing the end of her senior year in college when she started noticing symptoms — primarily issues with her balance.

“I was doing a 5K with my college roommates, and I was just feeling super awkward and clumsy — I would hit about three miles and feel really tired,” she told Fox News Digital.

Natalie and Monica Rex were shocked to discover that Natalie has Friedreich’s ataxia (FA), a rare, genetic and usually fatal neurological disease that affects only 6,000 people in the U.S. (Natalie and Monica Rex)

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That was abnormal for Natalie, who grew up playing sports in a very athletic family.

“I knew something was off,” she said.

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After seeing multiple doctors, having her blood drawn and getting tested for vitamin deficiencies, Natalie finally saw a neurologist.

“He had seen FA before, which was such a gift, because normally the path to diagnosis — particularly for a rare disease — is much longer, and mine was a very short time frame,” she added.

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The diagnosis was a lot to process for Natalie, who was three days from graduation and about to depart for a new job in New York.

“I remember thinking, ‘I can’t imagine what life would be without Natalie.’”

“I was trying to figure out how to get excited about life when I was experiencing everything crumbling,” she said.

“I was an emotional wreck — my whole family had never heard of FA, and we had no idea what to expect and how it would impact things.”

The twins, now age 30, were about to graduate from college when Natalie received her diagnosis. (Natalie and Monica Rex)

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Monica also had a difficult time processing the news.

“It felt like our lives were going to be drastically different and also diverge quite a bit,” she told Fox News Digital during the same interview.

“I remember thinking, ‘I can’t imagine what life would be without Natalie.’ It was a brutal time.”

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Monica has not yet gotten tested for FA, which she said was an “intentional decision.”

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“In the beginning, there would be moments where I would trip on something and would wonder if I should get tested,” she said. “But after seeing some of Natalie’s progression, I don’t think that I have FA.”

She added, “If I do have it, we’ll find out when we need to — but there’s no need to expedite that.”

What to know about FA

Friedreich’s ataxia (FA) is defined as a “genetic, progressive neuromuscular disease,” according to the Friedreich’s Ataxia Research Alliance.

Initial symptoms include balance and coordination problems, which ultimately lead to a loss of mobility.

“It felt like our lives were going to be drastically different and also diverge quite a bit,” Monica (left), the twin who does not have FA, told Fox News Digital. (Natalie and Monica Rex)

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Some people with FA also suffer from diabetes, scoliosis, fatigue, slurred speech, heart conditions, and vision and hearing impairment, the Alliance states.

As FA is genetic, a diagnosis is made by testing for a mutation in the gene FXN, which is responsible for causing the disease.

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Most people are diagnosed in childhood between 5 and 15 years of age, according to the Alliance, but about a quarter of people experience symptoms as adults, which is known as late-onset FA.

The disease is classified as “life-shortening,” with life expectancy typically ranging from 37 to 50 years.

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“It’s brutal to watch the person you love most in the world go through something they can’t control.”

While there is not yet a cure for FA, there are medications that can help control symptoms.

Natalie has participated in clinical trials for a drug called Skyclarys (omaveloxolone), the first FDA-approved therapy designed to slow progression of the disease.

Sisterly support

After Natalie’s diagnosis, she and her twin sister moved in together in Washington, D.C.

“Monica has taken on the role of being sister, friend, roommate and caregiver,” Natalie said. 

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“She wanted to stay close to help us live a very celebratory life while I’m in my more mobile years.”

“I think it’s really drawn us very close, which has been amazing,” Natalie (right) said of the twins’ experience of navigating life with FA. (Natalie and Monica Rex)

In many ways, the sisters enjoy life as they always have, hosting dinners and movie nights with friends — but in other ways, Natalie’s disease has resulted in two very different experiences for the twins.

“I think it’s really drawn us very close, which has been amazing,” Natalie said. 

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“But it’s also created a lot of moments where we have to understand that our limits and our constraints are different, and we have to work together to give each other the freedom to do things differently.”

Monica expressed her pride in her sister’s determination and tenacity as she navigates FA, including taking “agency and ownership” of her health and participating in physical therapy and personal training.

As Christians, the sisters have drawn comfort and support from their faith as they navigate the challenges of Natalie’s disease. (Natalie and Monica Rex)

“It is an incredibly unfair situation, but she is completely taking it in stride,” Monica said. 

“It’s brutal to watch the person you love most in the world go through something they can’t control that impacts every day and every moment — but we’ve just tried to take it day by day together.”

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The sisters see their friendship and relationship as a “unique gift,” Monica added.

“There have been moments of tension as we figure out what it looks like to navigate this together — but we will always be there for each other, and we’ll always have each other’s backs,” she added.

      

“At the end of the day, we truly just want what’s best for each other.”

Leaning on faith

As Christians, the sisters have drawn comfort and support from their faith as they navigate the challenges of Natalie’s disease.

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“I lean heavily into my faith to understand and process the purpose and hope that can come from a hopeless diagnosis like FA,” Natalie told Fox News Digital.

“The physical decline of Natalie’s body is a daily reminder that this world is not our home — and that one day, all things, including our bodies, will be made whole and healthy in eternity,” said Monica. (Natalie Rex)

One of Natalie’s favorite Bible verses is 2 Corinthians 4:16, which says, “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.”

Monica added that she trusts God has a “bigger plan” for their pain. 

“We’re going to have really hard moments, but we’re doing our best to make good things come from something hard.”

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“The physical decline of Natalie’s body is a daily reminder that this world is not our home — and that one day, all things, including our bodies, will be made whole and healthy in eternity,” she said.

Despite her day-to-day struggles, Natalie strives to stay as positive as possible, focusing on “disrupting the myth that that joy can only be found in a pain-free life.”

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“Life is not going to be perfect, but we can still make it really good,” she said. 

“We’re going to have really hard moments, but we’re doing our best to make good things come from something hard.”

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Health

How much red meat is too much? Experts weigh in on food pyramid updates

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How much red meat is too much? Experts weigh in on food pyramid updates

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The release of an updated food pyramid this week has sparked mixed reactions from doctors and dietitians.

One of the most noteworthy shifts in the 2025-2030 Dietary Guidelines for Americans — announced by HHS officials during a Jan. 7 press conference at the White House — is a greater emphasis on “high-quality proteins,” including red meat and eggs, as well as full-fat dairy.

The new guidelines focus on “real, whole, nutrient-dense foods,” and a dramatic reduction in highly processed foods, added sugars, refined carbohydrates and unhealthy fats.

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“Protein and healthy fats are essential and were wrongly discouraged in prior dietary guidelines,” Health Secretary Robert F. Kennedy Jr. said during the press conference. “We are ending the war on saturated fats.”

Nick Norwitz, a Harvard- and Oxford-trained researcher known for his work in metabolic health, shared his reaction to the new guidelines.

The release of an updated food pyramid this week has sparked mixed reactions from doctors and dietitians. (realfood.gov)

Despite how the new pyramid is presented, he noted, the actual guidelines for saturated fat consumption haven’t changed, as they still state that, “in general, saturated fat consumption should not exceed 10% of total daily calories.”

The intake of unprocessed whole foods rich in saturated fat, especially dairy fat, tends to be associated with improved health outcomes, according to Norwitz.

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“Full-fat dairy — especially cheese, for example — tends to be associated with lower BMI, reduced rates of diabetes and even reduced dementia risk,” he told Fox News Digital. “There are, of course, nuances — but ‘ending the war’ on saturated fat seems reasonable.”

Risks vary, experts say

Experts cautioned about the potential health risks of exceeding the recommended intake of saturated fat, including higher rates of LDL “bad” cholesterol, which is known to increase the risk of cardiovascular disease.

“The recommendation to limit saturated fat to 10% of total calories is based on the research showing that higher rates increase LDL cholesterol and associated risks for cardiovascular disease,” Sherry Coleman Collins, a food allergy dietitian and expert from the Atlanta metropolitan area, told Fox News Digital. 

One of the most noteworthy shifts in the 2025-2030 Dietary Guidelines for Americans is a greater emphasis on “high-quality proteins” — including red meat and eggs — as well as full-fat dairy. (iStock)

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Nutrition should be personalized and is dependent on multiple factors, she said, including age, gender, activity level and genetic risk factors.

“The total saturated fat an individual might safely consume is influenced by their size and total calorie needs, as well as potentially genetic differences,” Coleman Collins said.

Norwitz agreed, adding that “the specific food source and interaction with the unique host and their broader dietary context should take the spotlight.”

Dr. Pooja Gidwani, a double board-certified doctor of internal medicine and obesity medicine in Los Angeles, pointed out that not everyone has the same “tolerance” for saturated fats.

“If increasing saturated fat leads to a meaningful rise in LDL cholesterol or ApoB (Apolipoprotein B, a protein found on the surface of certain cholesterol-carrying particles in the blood), that intake level is excessive for that individual, regardless of improvements in weight or glucose metrics,” she said.

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“This personalized approach becomes increasingly important in midlife and beyond, when cardiovascular disease becomes the dominant driver of morbidity and mortality and when tolerance for cumulative atherogenic (artery-clogging) exposure is lower.”

For those who need to reduce LDL cholesterol or have a higher cardiovascular risk, the American Heart Association recommends an even lower amount of saturated fats — less than 6% of total daily calories.

Experts cautioned about the potential health risks of exceeding the recommended intake of saturated fat, including higher rates of LDL “bad” cholesterol. (iStock)

Gidwani also cautioned that diets emphasizing saturated fat could crowd out fiber and unsaturated fats, “both of which play independent roles in cholesterol clearance, insulin sensitivity, gut health and inflammation.”

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“Saturated fat-heavy patterns are also calorie-dense, which can quietly undermine long-term weight management if intake is not carefully regulated,” she added.

Not all saturated fats are equal, experts say

The effects of saturated fat depend on what specific foods are being consumed, according to experts.

“I would recommend choosing minimally processed or unprocessed forms of foods,” said Tanya Freirich, a registered dietitian nutritionist in Charlotte, North Carolina. “For example, in place of a hot dog — which has additives, nitrites, sodium and fillers — consuming a chicken thigh would be a much better choice.”

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Gidwani reiterated that the amount of processing plays a big role.

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“Processed meats are consistently associated with worse cardiometabolic outcomes and represent the clearest category to limit,” she said. “The risk here is not only saturated fat, but also sodium load, preservatives and the broader dietary pattern they tend to accompany.”

“Full-fat dairy — especially cheese, for example — tends to be associated with lower BMI, reduced rates of diabetes and even reduced dementia risk,” an expert told Fox News Digital. (iStock)

Unprocessed red meat, the doctor said, can fit into an overall healthy diet in smaller amounts, particularly when consumed alongside fiber-rich plants and minimally processed foods.

“However, from a longevity perspective, it should be viewed as optional rather than foundational, especially for individuals with elevated cardiovascular risk,” she added.

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When it comes to dairy, Gidwani noted that fermented options are “metabolically more favorable” than butter or cream.

“However, saturated fat from dairy is still not necessary to prioritize for metabolic health or longevity,” she said. “Excessive reliance on dairy fat can displace healthier fat sources without offering clear long-term benefit.”

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Overall, the doctor recommends unsaturated fat sources, including extra virgin olive oil, nuts, seeds, avocado and omega-3-rich fish, as primary dietary fats.

“These consistently support lipid profiles, insulin sensitivity and vascular health,” Gidwani said. “Saturated fat can exist within a balanced diet, but it should remain secondary rather than emphasized.”

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Why the big picture matters

Saturated fat is just one piece of a much wider nutrition puzzle, the experts agreed.

Unprocessed red meat can fit into an overall healthy diet in smaller amounts, particularly when consumed alongside fiber-rich plants and minimally processed foods, one expert said. (iStock)

“Our heart health is not determined by one type of fat or one type of cholesterol, but the sum of many parts — our entire diet, our exercise habits, our stress and so much more,” Freirich said.

She recommends consulting a registered dietitian for guidance on unique dietary needs based on age, gender, activity level and medical history.

“Our heart health is not determined by one type of fat or one type of cholesterol, but the sum of many parts — our entire diet, our exercise habits, our stress and so much more,” said an expert.  (iStock)

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New Jersey-based dietitian Erin Palinski-Wade, author of “2-Day Diabetes Diet,” added that the message should be to focus more on overall patterns.

That means “plenty of fiber-rich plants, lean protein at every meal (including those that also contain fiber, such as nuts and seeds) and a reduction in overall intake of added sugars.”

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“That change will drive true health improvements,” she said.

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Missing sleep may take a hidden toll on your brain and longevity, research reveals

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Missing sleep may take a hidden toll on your brain and longevity, research reveals

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Missing out on adequate sleep could be taking years off your life.

New research from the Oregon Health & Science University (OHSU), published in the journal Sleep Advances, found that poor sleep may shorten life expectancy more than other lifestyle factors like diet, exercise and loneliness.

The researchers analyzed nationwide CDC survey data, identifying trends associated with average life expectancy by county, according to a press release.

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The study found that lack of adequate sleep led to higher mortality risk in every U.S. state and was the top behavioral driver compared to other factors, only behind smoking.

Senior study author Andrew McHill, Ph.D., associate professor and director of the Sleep, Chronobiology, and Health Laboratory in the OHSU School of Nursing, noted in a statement that he did not expect sleep to be “so strongly correlated” to life expectancy.

Poor sleep is directly correlated with shorter life expectancy, the study reveals. (iStock)

“We’ve always thought sleep is important, but this research really drives that point home: People really should strive to get seven to nine hours of sleep, if at all possible,” he said.

“This research shows that we need to prioritize sleep at least as much as we do [in] what we eat or how we exercise.”

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In a previous interview with Fox News Digital, Dr. Daniel Amen, psychiatrist and owner of Amen Clinics in California, emphasized how important sleep is for brain function and longevity.

Researchers suggest people should prioritize sleep just as much as diet and exercise. (iStock)

“Sleep is so important,” he said. “When you sleep, your brain cleans and washes itself. And if you don’t sleep seven to nine hours at night, your brain looks older than you are — there’s less blood flow, and it increases inflammation in the brain.”

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“Your brain doesn’t have enough time to get rid of the toxins that build up during the day.”

Lack of adequate sleep can lead to poor decisions and foster toxic cycles, the doctor warned. 

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“If your brain has less activity in the front part, not only are you tired, but you’re also hungrier, and you’re more likely to not make the best decisions,” he said. 

“Which, of course, will stress you out, and then you won’t sleep well the next night.”

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A doctor suggests being “purposeful” about going to bed and waking up each day. (iStock)

One small change to promote longevity and brain health is to try getting to bed 15 minutes earlier, Amen suggested.

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“Really be purposeful about not being distracted by Netflix or your phone,” he said.

“And when you get up in the morning, say to yourself, ‘Today is going to be a great day.’ The more positive you are, the better your brain.”

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