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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A popular class of weight-loss drugs may prevent life-threatening cardiac complications by opening microscopic blood vessels that often remain blocked after a heart attack, according to a study published this week in Nature Communications.
The research, led by the University of Bristol and University College London, identified a biological brain-gut-heart signaling pathway.
This discovery appears to explain how GLP-1 drugs — which mimic glucagon-like peptide-1, a hormone that helps regulate blood sugar and appetite — protect heart tissue from a condition known as “no-reflow.”
“In nearly half of all heart attack patients, tiny blood vessels within the heart muscle remain narrowed, even after the main artery is cleared during emergency medical treatment,” Dr. Svetlana Mastitskaya, the study’s lead author and a senior lecturer at Bristol Medical School, said in a press release.
“This results in a complication known as ‘no-reflow,’ where blood is unable to reach certain parts of the heart tissue.”
In nearly half of all heart attack patients, tiny capillaries (blood vessels) remain narrowed even after the main blocked artery is cleared. (iStock)
This lack of blood flow increases the risk of heart failure and death within a year. GLP-1 medications could prevent this, according to the researchers.
How it works
When the GLP-1 hormone is released in the gut or administered as a drug, it sends a signal to the brain, which then sends a signal to the heart that switches on special potassium channels in tiny cells called pericytes.
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When these channels open, the pericytes relax, which allows the small blood vessels (capillaries) to widen and improve blood flow to the heart muscle, the researchers noted.
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The new study used animal models and cellular imaging to track how GLP-1 interacts with heart tissue. When the researchers removed the potassium channels, the drugs no longer protected the heart — confirming they play a key role.
The findings suggest that existing GLP-1 medications, already used for type 2 diabetes and obesity, could be repurposed as emergency treatments. (iStock)
The findings suggest that existing GLP-1 medications, already used for type 2 diabetes and obesity, could be repurposed as emergency treatments during or immediately after a heart attack to reduce tissue damage.
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The researchers noted several limitations, including that the study relied on animal models.
Clinical trials are necessary to determine whether the brain-gut-heart pathway operates with the same timing and efficacy in humans.
While the study highlights the drug’s immediate benefits during a heart attack, it des not establish whether long-term use of these drugs provides a pre-existing level of protection. (iStock)
Additionally, while the study highlights the drug’s immediate benefits during a heart attack, it does not establish whether long-term use of the medication provides a pre-existing level of protection.
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The research was primarily funded by the British Heart Foundation.
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Collagen supplements have exploded in popularity, touted as everything from an anti-aging miracle to a muscle recovery booster.
But a sweeping new review conducted by U.K. researchers suggests that while collagen may help improve skin elasticity and ease arthritis pain, it does little for athletic performance or wrinkle reduction.
Researchers from Anglia Ruskin University analyzed 16 systematic reviews and 113 randomized controlled trials involving nearly 8,000 participants worldwide, which they say is the most extensive evaluation of collagen’s health effects to date.
The review found consistent evidence that collagen supplementation improves skin elasticity and hydration over time and provides significant relief from osteoarthritis-related joint pain and stiffness, according to findings published in Aesthetic Surgery Journal Open Forum.
A large U.K. review found that collagen supplements may improve skin elasticity and hydration over time. (iStock)
The researchers, however, did not find meaningful improvements in post-exercise muscle recovery, soreness or tendon mechanical properties (strength, springiness and stretch resistance).
“Collagen is not a cure-all, but it does have credible benefits when used consistently over time, particularly for skin and osteoarthritis,” co-author Lee Smith, professor of public health at Anglia Ruskin University, said in a statement.
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“Our findings show clear benefits in key areas of healthy aging, while also dispelling some of the myths surrounding its use,” Smith added.
Collagen, the most abundant protein in the body, supports skin, bones, tendons, cartilage and connective tissue, according to experts. Natural collagen production begins to drop in early adulthood and declines more sharply with age.
The study found that collagen supplements may help reduce joint pain and stiffness in people with osteoarthritis. (iStock)
The review found that long-term collagen supplementation was linked to improved skin firmness and hydration, but did not help skin roughness — a proxy for visible wrinkles.
Benefits appear to accumulate gradually, suggesting that collagen should not be viewed as an “anti-wrinkle ‘quick fix,’ but as a foundational dermal support for individuals seeking holistic skin maintenance,” the researchers said.
“If we define anti-aging as a product or technique designed to prevent the appearance of getting older, then I believe our findings do support this claim for some parameters,” Smith told the BBC. “For example, an improvement in skin tone and moisture is associated with a more youthful-looking appearance.”
Collagen supplementation was linked to reduced pain and stiffness in people with osteoarthritis, with stronger benefits seen over longer periods of use, and showed modest improvements in muscle mass and tendon structure that may support healthy aging.
Collagen did not significantly improve skin roughness, a marker of visible wrinkles. (iStock)
However, it did not show meaningful results when used as a fast-acting sports performance supplement, and evidence for benefits related to cholesterol, blood sugar, blood pressure and oral health was mixed or inconclusive.
Dr. Daniel Ghiyam, a California-based physician and longevity specialist, said the findings align with what he sees in clinical practice.
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“Collagen is a targeted support tool, not a foundation of health or performance,” Ghiyam, who was not involved in the study, told Fox News Digital. “When marketed that way, it makes sense. When marketed as a cure-all, it doesn’t hold up to the data.”
The authors noted that while many previous collagen studies have received financial support from the supplement industry, the current review did not receive industry funding.
Experts say collagen supplements may offer modest benefits for skin hydration and joint comfort, but they are not a cure-all. (iStock)
The team called for more high-quality clinical trials examining long-term outcomes, optimal dosages and differences between collagen sources, such as marine, bovine and plant-based alternatives.
Among its limitations, the review could not determine whether certain forms of collagen work better than others or what the optimal regimen should be.
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While the review included randomized controlled trials, the quality of the studies varied, with newer research generally showing stronger results.
Experts say more data and studies are needed to build on the findings. They also noted that diet plays a crucial role in skin health.
Collagen supplements, often sold as powders or pills, may improve skin elasticity and ease joint pain, experts say. (iStock)
Dr. Erum Ilyas, a Pennsylvania-based dermatologist and chair of dermatology at Drexel University College of Medicine, noted that the review analyzed previously published meta-analyses rather than generating new primary data.
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“At this time, I have not seen sufficiently strong independent evidence to routinely recommend collagen supplements to my patients,” Ilyas, who was not involved in the review, told Fox News Digital.
“Although some studies show modest improvements in markers such as hydration and elasticity, there remains limited independent, biopsy-confirmed evidence demonstrating sustained increases in dermal collagen content,” she added.
Fox News Digital has reached out to the researchers for comment.
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