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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Eating too much salt has long been linked to high blood pressure, but new research suggests it could trick the immune system into prematurely aging the blood vessels.
A preclinical study recently published in the Journal of the American Heart Association has identified a biological chain reaction that links a salty diet to cardiovascular decay.
Scientists at the University of South Alabama observed that mice on a high-salt diet experienced rapid deterioration in their blood vessel function.
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After just four weeks of high sodium intake, the small arteries responsible for regulating blood flow lost their ability to relax, according to a press release.
The team found that the cells lining these vessels had entered a state of cellular senescence, a form of premature cellular aging in which cells stop dividing and release a mix of inflammatory signals that can damage surrounding tissue.
Excess salt has long been linked to high blood pressure, but a new study goes deeper into its effects on the cardiovascular system. (iStock)
The researchers tried to replicate this damage by exposing blood vessel cells directly to salt in a laboratory dish, but the cells showed no harmful effects.
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This suggests that salt isn’t directly causing damage to the vascular lining but that the real culprit may be the body’s own defense mechanism, the researchers noted.
Excess salt may trigger the immune system to release a molecule called interleukin-16 (IL-16), which acts as a messenger that instructs blood vessel cells to grow old before their time, according to the study.
Excess salt may trigger the immune system to release a molecule called interleukin-16, which acts as a messenger that instructs blood vessel cells to grow old before their time, according to the study. (iStock)
Once these cells age, they fail to produce nitric oxide, the essential gas that tells arteries to dilate and stay flexible.
To test whether this process could be reversed, the team turned to a class of experimental drugs known as senolytics.
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Using a cancer medication called navitoclax, which selectively clears out aged and dysfunctional cells, the researchers were able to restore nearly normal blood vessel function in the salt-fed mice, the release stated.
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By removing the decaying cells created by the high-salt diet, the drug allowed the remaining healthy tissue to maintain its elasticity and respond correctly to blood flow demands.
Excess salt may trigger the immune system into stopping the cells from dividing, the study suggests. (iStock)
The study did have some limitations. The transition from mouse models to human treatment remains a significant hurdle, the team cautioned.
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Senolytic drugs like navitoclax are still being studied for safety, and the team emphasized that previous trials have shown mixed results regarding their impact on artery plaque.
Additionally, the researchers have not yet confirmed whether the same IL-16 pathway is the primary driver of vascular aging in humans.
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Eating a diet high in fruits and vegetables was found to have a surprising link to lung cancer among younger non-smokers, early research suggests.
The observational study, led by Jorge Nieva, M.D., of the USC Norris Comprehensive Cancer Center at Keck Medicine, was presented this month at the American Association for Cancer Research (AACR) annual meeting in San Diego. It has not yet been peer-reviewed.
Researchers looked at dietary, smoking and demographic data for 187 patients who were diagnosed with lung cancer at age 50 or younger.
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They found that among non-smokers, there was a link between healthier-than-average diets – rich in fruits, vegetables and whole grains – and the chance of lung cancer development.
Young lung cancer patients ate more servings of dark green vegetables, legumes and whole grains compared to the average U.S. adult, the researchers found.
Eating a diet high in fruits and vegetables was found to have a surprising link to lung cancer among younger non-smokers, early research suggests. (iStock)
The researchers hypothesized that pesticides applied to conventionally grown produce could be a possible factor in the disease association.
“Commercially produced (non-organic) fruits, vegetables and whole grains are more likely to be associated with a higher residue of pesticides than dairy, meat and many processed foods,” according to Nieva. He also noted that agricultural workers exposed to pesticides tend to have higher rates of lung cancer.
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“There is a large subset of lung cancer patients whose disease is not caused by smoking,” Nieva told Fox News Digital.
The disease is becoming more common in non-smokers 50 and younger, especially women – despite the fact that smoking rates have been falling for decades, the researcher noted.
The researchers hypothesized that pesticides applied to conventionally grown produce could be a possible factor in the disease association. (iStock)
“These patients tend to have eaten much healthier diets before their diagnosis than the average American,” he went on. “We need to support research into understanding why Americans – and women in particular – who no longer smoke very much are still having lung cancer,” he said.
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The study did have some limitations, Nieva acknowledged, primarily that it relied on survey data and was limited by the participants’ memories of their food intake.
“Also, the survey participants were self-selected, and this could have biased the findings,” he told Fox News Digital.
“There is a large subset of lung cancer patients whose disease is not caused by smoking.”
The researchers did not test specific foods for pesticides, relying instead on average pesticide levels for certain types of food. Looking ahead, they plan to test patients’ blood and urine samples to directly measure pesticide levels, Nieva said.
Although the study shows only an association and does not prove that pesticides caused lung cancer, Nieva recommends that people wash their produce before eating and choose organic foods whenever possible.
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“This work represents a critical step toward identifying modifiable environmental factors that may contribute to lung cancer in young adults,” said Nieva. “Our hope is that these insights can guide both public health recommendations and future investigation into lung cancer prevention.”
“It is possible that the increased lung cancer risk could be due to pesticide exposure in whole farmed foods, but is by no means certain,” a doctor said. (AP Photo/Charlie Neibergall)
Dr. Marc Siegel, Fox News senior medical analyst, said the study is “interesting,” but that it “raises far more questions than it answers.”
“It is a small study (around 150) and observational, so no proof,” the doctor, who was not involved in the research, told Fox News Digital.
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“It is possible that the increased lung cancer risk could be due to pesticide exposure in whole farmed foods, but it is by no means certain,” Siegel went on. “How much exposure is needed? How much of it gets into food and in which areas? This requires much further study.”
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Kayla Nichols, communications director for Pesticide Action & Agroecology Network, a distributed global network, said the organization agrees with the study’s conclusion that more research should be done on the rise in lung cancer, particularly in individuals eating diets higher in produce and fiber.
“There is a large subset of lung cancer patients whose disease is not caused by smoking,” the researcher told Fox News Digital. (iStock)
“There is a bounty of existing research that already links pesticide exposure to increased risk of multiple types of cancers,” Nichols, who was also not involved in the study, told Fox News Digital. She called for more research on chronic, low-level exposures to pesticides, as well as more effective policies to protect the public from pesticide residues on food.
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The study was supported by the National Institutes of Health and the National Cancer Institute, as well as industry partners including AstraZeneca and Genentech, among others.
Fox News Digital reached out to several pesticide companies and trade groups for comment.
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