The Fields Condition: A Rare Journey of Courage and Mystery

Imagine being one of only three people in the world with a medical condition so unique it’s named after you. For Catherine and Kirstie Fields, identical twins from Llanelli, Wales, this is their reality. They live with a rare neuromuscular disorder called the Fields Condition, a mysterious illness that has puzzled doctors and researchers for decades. Their story is one of resilience, humor, and an unbreakable bond, even as they face challenges most of us can’t imagine. At Phacts, we’re diving deep into their journey, exploring what the Fields Condition is, how it affects their lives, and why it remains one of the greatest medical mysteries today.

Who Are Catherine and Kirstie Fields?

Catherine and Kirstie Fields were born in 1994 in the small town of Llanelli, South Wales. Like most identical twins, they shared everything—looks, laughter, and a love for life. As toddlers, they hit all the usual milestones: crawling, walking, talking, and even riding their bikes. Their parents, Lyn and Chris, watched them grow with joy, unaware that something was quietly brewing beneath the surface. The twins were healthy, happy, and full of mischief, toddling around and getting into all sorts of playful trouble.

But when the girls were about three years old, their parents noticed something unusual. Kirstie started stumbling and falling more than other kids her age. At first, it seemed like clumsiness, but soon Catherine began showing the same signs. Their balance was off, and simple tasks like running or climbing stairs became harder. By the time they were four, doctors began to suspect something serious, but no one could figure out what was wrong. Little did anyone know, the twins were about to make medical history.

What Is the Fields Condition?

The Fields Condition is a neuromuscular disorder, meaning it affects the nerves that control muscles. It’s so rare that only three people in the world are known to have it—Catherine, Kirstie, and one other unidentified person. The condition was named after the twins because they were the first diagnosed cases, making them a focal point for researchers trying to understand this mysterious illness.

Unlike more common disorders, the Fields Condition doesn’t match any known disease. Doctors have run countless tests, from blood work to muscle biopsies, but they still can’t pinpoint its cause. They believe it’s likely congenital, meaning the twins were born with it, and it may be genetic, which raises questions about whether it could be passed on to future generations. What makes the condition even more baffling is its progressive nature—it gets worse over time, slowly robbing the body of its ability to function normally.

The First Signs of Trouble

For Catherine and Kirstie, the Fields Condition announced itself subtly. At age three, their balance issues were the first red flags. While other kids ran and jumped with ease, the twins struggled to keep steady. Their parents took them to doctors, who initially thought it might be a form of cerebral palsy. But tests ruled that out, and the mystery deepened. By age four, the twins were officially diagnosed with an unknown neuromuscular disorder, later named the Fields Condition.

As they started school, the signs became harder to ignore. Kirstie would fall often, and Catherine wasn’t far behind. Their parents recall how the twins always seemed to mirror each other’s symptoms. If one had a tooth coming in, the other might feel the pain. If one stumbled, the other soon followed. This uncanny connection made their condition even more unique, as it seemed to progress in lockstep between them.

A Progressive Decline

By the time Catherine and Kirstie were nine, the Fields Condition had taken a firmer grip. Walking became so difficult that they needed walking frames to get around. Their muscles were weakening, and their legs shook uncontrollably when they tried to stand. Just two years later, at age eleven, they could no longer walk at all. Wheelchairs became their primary means of mobility, a major adjustment for two young girls who once loved riding bikes and playing outdoors.

The condition didn’t stop there. By their early teens, the twins lost the ability to write, eat, or even smile easily. Simple tasks like holding a pencil or swallowing food became impossible. Their hands trembled constantly, and their muscles grew stiffer, making everyday activities a struggle. By age fourteen, the Fields Condition stole their voices, leaving them unable to speak without assistance. For most people, losing the ability to communicate would be devastating, but Catherine and Kirstie faced this challenge with remarkable strength.

Painful Spasms and Daily Struggles

One of the most challenging aspects of the Fields Condition is the muscle spasms. Catherine and Kirstie experience over 100 spasms a day, each one painful and uncontrollable. These spasms can strike at any time, causing their muscles to tighten and twist in ways they can’t control. Emotional stress, whether from sadness or excitement, makes the spasms worse, creating a vicious cycle. The more upset they feel, the more their muscles seize up, and the more their muscles seize up, the more distressed they become.

To manage these spasms, the twins have tried various treatments, including a unique ultrasound-guided Botox therapy. In 2021, they were among the first in Wales to receive this treatment at home, thanks to the Hywel Dda University Health Board. The Botox helps relax their muscles temporarily, reducing the frequency and intensity of spasms. While it’s not a cure, it’s made a big difference in their comfort, sparing them long, exhausting trips to the hospital.

Losing Their Voices, Finding New Ones

When Catherine and Kirstie lost their ability to speak, it was a heartbreaking blow. For years, they relied on gestures, facial expressions, and the patience of their family to communicate. But in 2012, just before their eighteenth birthday, their lives changed dramatically. The National Health Service (NHS) provided them with electronic speech machines, similar to the one used by physicist Stephen Hawking. These devices gave the twins their voices back, opening up a world of possibilities.

In a playful twist, the twins chose different accents for their machines—Kirstie picked an Australian accent, and Catherine went with an American one. This choice not only helped people tell them apart but also showcased their sense of humor. Kirstie, known for her cheeky personality, wasted no time using her new voice to tease her parents. One of her first questions was a bold one: “Mum, do you and Daddy still have sex?” Her parents, Lyn and Chris, laughed it off, thrilled to hear their daughters’ personalities shine through again.

The speech machines have been a game-changer. Catherine and Kirstie can now argue, joke, and share their thoughts with the world. They’ve even used their voices to talk about their favorite singer, Harry Styles, and to express their love for their Welsh heritage. Though the machines don’t offer a Welsh accent—a small disappointment for the twins, whose first language was Welsh—they’re grateful to communicate at all.

A Life of Courage and Humor

Despite the challenges of the Fields Condition, Catherine and Kirstie have never lost their spirit. They’re known for their infectious smiles and unwavering optimism, qualities that earned them the “Smile of the Year” award from That’s Life! magazine in 2005. At just eleven years old, they captured hearts with their ability to stay bright and hopeful, even as their bodies betrayed them.

Their humor is a big part of what keeps them going. Kirstie, the more mischievous of the two, loves winding up her parents with her cheeky comments. Catherine, slightly more reserved, often laughs at her sister’s antics, calling her “embarrassing” but admitting she loves her to bits. Their bond as twins is unbreakable, and they lean on each other for strength, even when the Fields Condition makes life unpredictable.

The Impact on Their Family

The Fields Condition doesn’t just affect Catherine and Kirstie—it shapes the lives of their entire family. Lyn and Chris have been their biggest advocates, navigating the emotional and logistical challenges of caring for two daughters with a rare illness. The twins require 24/7 care, which means carers are a constant presence in their home. This lack of privacy has been tough, especially in their small living space, where the family often feels “trapped” in the living room.

In 2017, the family began a project to extend their home, hoping to create a larger, more accessible space for the twins. The extension would include a lounge and kitchen area, giving Catherine and Kirstie more independence and room for their specialized equipment. But the project stalled when a builder was unable to complete the work, leaving the family in limbo. A crowdfunding campaign was launched to raise funds, highlighting the community’s support for the twins and their family.

Lyn, the twins’ mother, has spoken openly about the toll of caregiving. Hospital visits are exhausting, often taking five or six hours, and coordinating extra support for the twins is a constant challenge. Yet Lyn and Chris remain fiercely proud of their daughters, marveling at their ability to face each day with courage and joy.

A Medical Mystery

The Fields Condition remains a puzzle for the medical world. Because it’s so rare, doctors have limited data to work with, making it hard to study or treat. The twins have undergone countless tests, but no definitive cause has been found. Some researchers believe it’s genetic, which raises concerns about whether it could be passed on to future generations. Others wonder if it’s a one-of-a-kind mutation, unique to the twins and the third known case.

The prognosis is equally uncertain. No one knows if the Fields Condition is fatal or what the life expectancy might be for those affected. This uncertainty weighs heavily on the twins and their family, but it also fuels their determination to live life to the fullest. Catherine and Kirstie don’t dwell on the unknown—they focus on the present, finding joy in small moments and big milestones.

Celebrating Milestones

Despite their challenges, Catherine and Kirstie have celebrated some incredible moments. Their eighteenth birthday in 2012 was a standout, marked by matching butterfly tattoos and a party at their local rugby club. The twins dressed up, surrounded by friends and family, and used their new speech machines to share their excitement. A Welsh TV show, O’r Galon (From the Heart), followed their preparations, giving the world a glimpse into their lives and their unbreakable spirit.

The twins have also been involved with Ty Hafan, a hospice in Wales that provides respite care. They’ve taken part in photo shoots and shared their story to raise awareness about rare conditions. Their carers at Ty Hafan describe them as “delightful” and “amazing,” always thinking of others despite their own struggles.

Living with Purpose

Catherine and Kirstie’s story is a powerful reminder that life, no matter how challenging, is worth living. Through their speech machines, they’ve shared messages of hope and resilience. Kirstie once said, “Don’t feel sorry for us, life is too short. Be happy and smile.” It’s a simple but profound message from two young women who know the value of every moment.

Their Welsh heritage is a big part of their identity. Before losing their voices, they spoke Welsh fluently, and they’ve expressed a wish for their speech machines to one day offer a Welsh accent. For now, their American and Australian accents add a playful touch to their conversations, but their love for Wales shines through in everything they do.

The Future of the Fields Condition

What lies ahead for Catherine and Kirstie? The truth is, no one knows. The Fields Condition is a medical enigma, and researchers continue to study it in hopes of finding answers. Advances like the ultrasound Botox treatment show promise for improving quality of life, but a cure remains out of reach. For now, the twins focus on living day by day, supported by their family, carers, and a community that rallies around them.

Their story has inspired people around the world, from medical professionals to everyday readers. At Phacts, we’re honored to share their journey, shining a light on the strength it takes to face a rare illness with grace and humor. Catherine and Kirstie Fields are more than their condition—they’re sisters, daughters, and beacons of hope.

Join the Phacts Community

The Fields Condition may be rare, but the courage of Catherine and Kirstie Fields is universal. Their story reminds us to cherish life, support one another, and never give up, even when the odds seem impossible. At Phacts, we’re passionate about uncovering stories like theirs—stories that inform, inspire, and connect us.

Want to stay updated on fascinating stories and the latest insights? Subscribe to phactsblog.com for more articles that dive deep into the world’s most compelling topics. Follow us on social media, share this story, and join our community of curious minds. Let’s keep exploring the facts that shape our world—together.

• ShareCopied to clipboard