Twin sisters' bond is strengthened by rare disease diagnosis: 'We're in this together'

Natalie and Monica Rex, as twins and best friends, had spent their entire lives together and were eager to continue those shared experiences into adulthood.

Eight years ago, before college graduation, the twins, now 30, were stunned to learn that Natalie has Friedreich's ataxia (FA), a rare genetic and usually fatal neurological disease affecting only 6,000 people in the U.S.

The sisters discussed their experiences with a rare disease on Planet Chronicle Digital, highlighting how it has brought them closer together.

As she approached the conclusion of her senior year in college, Natalie began experiencing symptoms, mainly problems with her balance.

She shared with Planet Chronicle Digital that she felt awkward and clumsy while doing a 5K with her college roommates. She would hit about three miles and feel extremely tired.

Natalie, who grew up in an athletic family, found it unusual to not participate in sports.

"I knew something was off," she said.

Finally, after seeing multiple doctors, having her blood drawn, and being tested for vitamin deficiencies, Natalie saw a neurologist.

She had previously seen FA, which was a blessing because typically the journey to diagnosis for a rare disease is lengthy, and hers was a brief time frame.

The upcoming 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.’"

She said, "I struggled to find excitement in life as everything around me was falling apart."

"My family and I were clueless about FA, and the lack of knowledge made me feel overwhelmed."

Monica also had a difficult time processing the news.

During the interview, she shared with Planet Chronicle Digital that she felt like their lives would undergo significant changes and diverge significantly.

"I recall thinking, 'I can't fathom what life would be without Natalie.' It was a tumultuous period."

Monica has not yet been tested for FA, as she stated it was a deliberate choice.

"Initially, I would sometimes stumble and contemplate whether I should undergo testing. However, observing Natalie's advancement has led me to believe that I do not have FA."

"We'll discover if I have it when necessary, but there's no urgency to do so."

What to know about FA

According to the Friedreich's Ataxia Research Alliance, Friedreich's ataxia (FA) is a "progressive neuromuscular disease with a genetic basis."

Loss of mobility is the ultimate result of initial symptoms such as balance and coordination problems.

The Alliance states that some people with FA may also experience diabetes, scoliosis, fatigue, slurred speech, heart conditions, and vision and hearing impairment.

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

According to the Alliance, most people are diagnosed with Friedreich's ataxia in childhood, between the ages of 5 and 15. However, a quarter of individuals experience symptoms as adults, which is referred to as late-onset FA.

Life expectancy for individuals with the disease typically ranges from 37 to 50 years, making it classified as "life-shortening."

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

Medications can help manage symptoms of FA, although a cure has not yet been discovered.

Natalie has taken part in clinical trials for Skyclarys (omaveloxolone), the first FDA-approved drug to slow the progression of the disease.

Sisterly support

In Washington, D.C., Natalie and her twin sister moved in together following her diagnosis.

Natalie stated that Monica has assumed the role of sister, friend, roommate, and caregiver.

"She desired to remain near to assist us in living a joyous life as I enter my more nomadic phase."

The twins have always enjoyed life together, hosting dinners and movie nights with friends. However, Natalie's disease has resulted in two very different experiences for the sisters.

"I believe it has brought us closer, and that's been wonderful," Natalie remarked.

"Additionally, it has resulted in numerous instances where we must recognize that our limitations and restrictions differ, necessitating collaboration to allow for individual flexibility in action."

Monica expressed pride in her sister's determination and tenacity in managing FA, as she took "ownership" of her health and engaged in physical therapy and personal training.

"Although it's an unfair situation, Monica is handling it with ease," she stated.

"Watching your loved one struggle with something they can't control that affects every aspect of their life is heartbreaking, but we've tried to face it together one day at a time."

Monica stated that their bond is a "one-of-a-kind treasure."

"We have experienced tense moments while figuring out how to navigate this together, but we will always be there for each other and have each other's backs," she stated.

"In the end, our main goal is to ensure the well-being of one another."

Leaning on faith

The sisters have found solace and encouragement from their faith during the trials of Natalie's illness.

Natalie told Planet Chronicle Digital that she relies heavily on her faith to comprehend and cope with the meaning and optimism that can arise from a bleak prognosis like FA.

One of Natalie's most cherished Bible verses is 2 Corinthians 4:16, which states, "Though our outward appearance is deteriorating, we remain renewed on the inside each day."

Monica stated that she believes God has a "greater purpose" for their suffering.

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

"Natalie's physical decline serves as a daily reminder that this world is not our permanent home, and that one day, our bodies, like all things, will be restored to perfection in eternity," she stated.

Natalie aims to maintain a positive outlook, challenging the belief that happiness can only be achieved in the absence of difficulties.

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Despite the fact that life won't be flawless, we can still make it excellent, she stated.

"Despite the challenges we face, we strive to turn difficult situations into positive outcomes."