Health
Rare disease diagnosis strengthens bond between twin sisters: ‘Doing our best’
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.
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)
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.
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)
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.”
“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)
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.
“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.
“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.”
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.
“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.”
“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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Amid warnings of a Legionnaires’ disease outbreak on Manhattan’s Upper East Side, health experts say that early recognition of symptoms can mean the difference between a quick recovery and life-threatening complications, especially for high-risk groups.
New York City health officials are urging anyone who has visited the east side of Central Park or Manhattan’s Upper East Side since late June to watch for symptoms.
As of July 6, the New York City Health Department had confirmed 23 cases and 17 hospitalizations associated with the respiratory infection. No deaths have been reported.
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Officials are investigating contaminated cooling towers as the likely source. They have emphasized that the illness is not spread person-to-person and is not linked to the city’s drinking water.
Health experts say that early recognition of symptoms can mean the difference between a quick recovery and life-threatening complications, especially for high-risk groups. (iStock)
“Legionnaires’ disease is deadly but can be effectively treated if diagnosed early,” said NYC Health Commissioner Dr. Alister Martin in a press release. “New Yorkers at higher risk, including anyone who is 50 and older, those who smoke or people with chronic lung conditions should be especially mindful of their symptoms and seek care as soon as symptoms begin.”
What is Legionnaires’?
Legionnaires’ disease is a type of pneumonia caused by Legionella bacteria.
The bacteria is usually found in lakes, streams and other freshwater environments, but can grow in any area where water sits for a long time, according to the CDC.
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That can include shower heads, sink faucets, hot tubs, water features/fountains, plumbing systems and other water systems.
When people swallow or breathe in droplets of water that contain Legionella, they can potentially become ill.
Although human transmission is possible in rare cases, the disease is not typically transmitted among people, per the Centers for Disease Control and Prevention.
Symptoms of infection
Infections can lead to severe pneumonia in older people and those with compromised immune systems, according to Dr. Andrew Handel, a pediatric infectious diseases expert at Stony Brook Children’s Hospital on Long Island, New York.
Symptoms of Legionnaires’ disease usually show up between two and 14 days after exposure.
New York City health officials are urging anyone who has visited the east side of Central Park or Manhattan’s Upper East Side since late June to watch for symptoms. (iStock)
“Legionella infections cause symptoms that are similar to other forms of pneumonia — fever, coughing, difficulty breathing, shortness of breath and chest pain,” Handel previously told Fox News Digital.
“Legionnaires’ disease is deadly but can be effectively treated if diagnosed early.”
The signs are similar to other types of pneumonia, and include the following:
- Cough
- Fever
- Shortness of breath
- Muscle aches and headaches
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Some patients may also experience nausea, diarrhea and confusion, the CDC noted.
Diagnosis, treatment and prevention
A medical professional can diagnose the infection with laboratory tests and chest X-rays.
The condition is typically treated with antibiotics. In cases of severe infection, hospitalization may be required for breathing support and IV hydration.
Around 10% of people who contract Legionnaires’ disease will die from those complications — and the mortality risk rises to 25% for those who get Legionnaires’ while staying in a healthcare facility, according to the CDC.
The bacteria is usually found in lakes, streams and other freshwater environments, but can grow in any area where water sits for a long time, according to the CDC. (iStock)
“Treatment needs to be early and aggressive,” Dr. Nathan Goodyear, an Arizona-based integrative medicine expert, previously told Fox News Digital. “Legionella infection is an intracellular infection that requires antibiotic treatment.”
Antibiotics that are appropriate for Legionella infection include Levofloxacin and Azithromycin.
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“Therapy can be prescribed orally in healthy individuals… but intravenous antibiotics often prove to be the initial option for treatment secondary to the pathogenicity of the disease,” Goodyear said.
Currently, there are no vaccines for Legionnaires’ disease.
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The best strategy to prevent infection is to reduce the growth and spread of the Legionella bacteria. The CDC recommends that building owners and managers use a water management program to reduce the risk.
“New Yorkers at higher risk, including anyone who is 50 and older, those who smoke or people with chronic lung conditions should be especially mindful of their symptoms and seek care as soon as symptoms begin,” city officials stated. (iStock)
To prevent serious illness from Legionnaires’, Goodyear recommends that all smokers kick the habit, and also emphasizes the need to “aggressively support” chronic pulmonary disease.
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“Increasing immune support (vitamin D3, vitamin C, Zinc) is required to counter the immune dysfunction associated with advancing age.”
Obesity is another foundational risk factor for all chronic inflammatory diseases, the doctor added.
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Journalist Katie Couric is sharing a scary medical episode that she experienced on June 27.
In a post on Substack titled “The Day I’ll Never Remember,” she detailed a sudden episode that left her unable to recall the current month, year and president.
“I thought it was 2024. And I believed Joe Biden was president,” she wrote.
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The event occurred while Couric was attending the Aspen Ideas Festival in Colorado, during which she participated in two public panels — one on AI and one on journalism — both of which she cannot remember at all.
“I have no idea what we talked about, or of what occurred when the panels ended,” she said.
Journalist Katie Couric is sharing a scary medical episode that she experienced on June 27. (Getty Images)
John Molner — Couric’s husband, who was in attendance at the festival and the two panels — also shared his account.
After the event, someone told Molner that Katie wasn’t feeling well. When he reached her, an EMT and a doctor were tending to her. “I could tell something was off,” he wrote. “It could have been altitude sickness, but Katie was definitely not all there.”
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At the hospital, when Couric struggled to recall the year, the president and her grandchildren’s names, doctors began checking for a stroke.
An MRI revealed no signs of stroke, which was a relief, but “Katie’s ‘fog’ became a lot more apparent,” Molner wrote.
John Molner, Couric’s husband, who was in attendance at the festival and the two panels, also shared his account. (Getty Images)
“She repeatedly asked me the same questions: ‘What was I doing before we got to the hospital?’ ‘Why am I at the hospital?’”
Couric was ultimately diagnosed with transient global amnesia, a sudden, temporary episode of memory loss that prevents a person from forming new memories and may also erase some recent memories, according to Mayo Clinic.
“The cause seems to be as mysterious as the brain itself.”
It is not caused by a stroke, seizure or head injury, and it usually resolves completely within 24 hours.
“[It’s] just a very weird neural episode that’s pretty uncommon and, at least in most cases, is a ‘one and done’ experience,” Molner said.
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Couric said she finally began feeling “like herself” again around 9 p.m. and went to sleep at 2 a.m.
As TGA leaves a “permanent gap in memory” for the duration of the episode and for hours beforehand, Couric said that from around noon on that day until at least 7 p.m. will remain a “big, black hole.”
As TGA leaves a “permanent gap in memory” for the duration of the episode and for hours beforehand, Couric said that from around noon on that day until at least 7 p.m. will remain a “big, black hole.” (Getty Images)
Data shows that approximately three to eight people per 100,000 will have an episode of transient global amnesia, with people 50 years of age and older at higher risk.
The specific cause of TGA is not known, but some experts believe it stems from a “temporary dysfunction in the brain’s hippocampus — the area responsible for creating new memories,” Couric shared.
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“Doctors believe this is driven by brief interruptions in blood or oxygen flow, or microscopic spasm in the blood vessels.”
Episodes could potentially be triggered by intense physical exertion, emotional distress, extreme temperature changes or migraines, experts say.
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Approximately 15% of patients will have a recurrence 10 years later.
“Why did this happen to me? Was the altitude an issue? Was I dehydrated? Tired? Stressed? The literature doesn’t seem to indicate that these are contributing factors, but the cause seems to be as mysterious as the brain itself,” Couric wrote.
Anyone who experiences sudden memory loss, confusion, difficulty speaking, weakness, numbness, vision changes, severe headache or other stroke-like symptoms should seek immediate medical attention or call 911, doctors advise. (iStock)
“All I know is that those hours will be forever lost. Someone described it as my brain failing to hit the ‘record button.’”
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“While this was a freaky occurrence, it could have been much more serious. So ultimately, I’m relieved — even though several hours of a Saturday in June will always be missing for me.”
Anyone who experiences sudden memory loss, confusion, difficulty speaking, weakness, numbness, vision changes, severe headache or other stroke-like symptoms should seek immediate medical attention or call 911, doctors advise.
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Older adults identified as “super movers” are about half as likely to develop cognitive impairment than their peers.
That’s according to a recent study led by Stony Brook Medicine in New York, which evaluated the cognitive function of 4,000 adults 80 and over who participated in multiple aging and longevity studies over several years.
Among this group, 6% to 10% were classified as super movers, which means they walk at a much faster pace than others of the same age and gender — at speeds comparable to people three decades younger.
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The super movers were found to have about half the risk of cognitive decline compared to seniors with typical gait speed.
The findings were published in the journal Neurology on June 16.
Older adults identified as “super movers” are about half as likely to develop cognitive impairment than their peers. (iStock)
“The study reinforces that mobility and brain health are closely connected,” lead study author Dr. Joe Verghese, MD, neurologist at Stony Brook Medicine, told Fox News Digital. “This suggests that preserving mobility may be an important marker of healthy brain aging and resilience.”
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The most intriguing finding, according to Verghese, was that super movers maintained cognitive function despite having similar dementia-related brain changes as their peers.
In postmortem brain analysis, there was no difference in dementia-related pathologies between the super movers and the slower walkers, the study stated.
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“This suggests they may possess resilience mechanisms that help preserve brain function even in the presence of age-related changes,” he said. “Understanding these resilience factors could lead to new strategies for promoting healthy brain aging.”
As the study was observational, there were some limitations, and it does not prove that walking faster prevents dementia, the researchers noted.
Super movers were found to have about half the risk of cognitive decline compared to seniors with typical gait speed. (iStock)
“Other factors, such as cardiovascular health, physical fitness or genetics, may also contribute to both faster walking and better cognitive outcomes,” Verghese said.
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This study adds to growing evidence that what’s good for the heart and muscles also benefits the brain, he noted, adding that “staying physically active remains one of the most effective, evidence-based ways to support healthy aging.”
“Walking speed is best viewed as a marker of overall health, not a treatment.”
“The broader message is that physical activity is important at any age,” Verghese said. “Walking is an easy step-up point because you don’t need any special equipment. You can do it inside or outdoors, and you can do it on a regular basis. You can walk with a dog, you can walk with a friend.”
Any activity is beneficial if it’s done regularly and with the right intensity, he added.
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Rather than just trying to walk faster, the neurologist recommends that seniors focus on maintaining mobility through regular physical activity, strength training, balance exercises and good cardiovascular health.
“Walking speed is best viewed as a marker of overall health, not a treatment,” Verghese noted.
Major public health guidelines from the CDC and U.S. Physical Activity Guidelines recommend at least 150 minutes of moderate-intensity aerobic activity each week, such as brisk walking.
Major public health guidelines from the CDC and U.S. Physical Activity Guidelines recommend at least 150 minutes of moderate-intensity aerobic activity each week, such as brisk walking. (iStock)
This can be achieved by walking 30 minutes a day, five days a week, or about 20 to 25 minutes most days. Another option is to engage in shorter sessions that add up over the day.
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“You have to do it within your health limitations and medical conditions,” Verghese advised. “So if there are any medical concerns, I would get your physician to clear you before starting exercise.” The good thing about walking, he added, is that you can start at a slow pace and then gradually build up to a brisker pace.
“And then adding on strength and balance training, whatever age you are, I think is also important.”
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