Imagine a night sky brimming with stars, each a potential host to planets beyond our solar system. They are mysterious, diverse, and endlessly fascinating. They remind us that the universe is vast, filled with countless possibilities and unknown wonders.
For Daval, a passionate scientist living with the rare condition Epidermolysis Bullosa Simplex (EBS), this universe offers intellectual excitement and a unique form of solace. His story is one of resilience, curiosity, and a profound love for learning, especially in the awe-inspiring field of planetary science. This year, at Rarefest24, Daval will share his journey and the wonders of the cosmos with an audience eager to explore the parallels between the mysteries of space and the intricacies of rare diseases.
The Infinite Wonders of Planetary Science
Planetary science, a branch of physics, delves into the secrets of planets, moons, and other celestial bodies. It encompasses the study of planetary interiors, atmospheres, and, notably, exoplanets—worlds orbiting stars other than our sun. When an exoplanet transits—or passes in front of a star—this variation in brightness provides crucial information about both the star and the planet. It’s a puzzle of light and shadow that Daval is dedicated to unravelling.
“As a planet passes in front of the star, there’s a dip in the light, like when our moon passes in front of the sun, we have an eclipse. The dip in light can be miniscule, but our sensors can pick it up if it’s a larger planet—this tells us we might be seeing an exoplanet.”
Earlier this year, Daval was part of a team that made an extraordinary discovery—a brand-new planetary system, TOI-4633. This system boasts not just one but two planets: one resembling a mini-Neptune and the other on a different orbit. To make this discovery even more thrilling, these planets orbit not one but two stars. This discovery, published in a scientific paper, is a testament to Daval’s dedication and expertise in his field.
But Daval’s fascination with space isn’t just academic; it’s deeply personal. Like many of us, he fell in love with space as a child, captivated by the idea that every planetary body has its own unique traits and personality. No two planets are the same, just as no two people are the same. And just as countless other worlds are out there waiting to be discovered.
A Journey Marked by Challenges and Discoveries
From an early age, Daval required extensive medical attention. Born in Portugal, he spent three months in the hospital after birth, with doctors unsure how to treat him. His family soon moved to India, where they sought help from many specialists, but it wasn’t until they moved to the UK that Daval received a formal diagnosis at Great Ormond Street Hospital. He was diagnosed with Epidermolysis Bullosa Simplex (EBS), a rare genetic skin condition. Even then, the prognosis was sobering—there were no treatment options available, only ways to manage the symptoms with creams and bandages.
EBS affects only about 5,000 people in the UK, with only ten people estimated to live with Daval’s specific gene mutation in the KRT14 gene. The condition causes painful blisters on the skin due to heat and friction. For Daval, this means living with significant chronic pain, difficulty walking, and challenges using his hands.
Despite these challenges, Daval’s passion for learning and science never wavered. His mind became his sanctuary, where the universe’s wonders could flourish. Today, he is pursuing a master’s degree, with his thesis focused on gravity darkening in exoplanet transits. His ultimate goal? A PhD that will allow him to delve even deeper into the mysteries of space.
The Curious Parallels between Planetary Science and Rare Conditions
Daval’s keen eye for science has observed intriguing parallels between studying exoplanets and rare diseases. Just as every exoplanet is unique—some are super-Earths, while others are gas giants or rocky worlds—rare diseases are incredibly diverse, with over 11,000 conditions affecting millions worldwide. Each rare disease, like each exoplanet, has its own distinct challenges and characteristics.
However, neither exoplanets nor rare diseases are as rare as they seem. While we’ve discovered just over 5,500 exoplanets, they are actually common, with billions scattered across the vastness of the universe. Similarly, 1 in 16 people live with a rare condition—individually rare but collectively common.
Detecting exoplanets using the transit method is similar to diagnosing rare diseases. Both processes require piecing together fragmented clues from various analyses, like phenotypic and genetic tests in medical diagnosis. The transit method can determine a planet’s size but not its mass, so a planet could be as massive as 53 Jupiters without us knowing. Similarly, larger planets that orbit very close to their host stars—like hot Jupiters—are easier to detect. This bias mirrors how common conditions are often diagnosed before rare diseases, leading to potential misdiagnoses. In both fields, biases and the risk of false positives make achieving precise and accurate understanding a significant challenge.
Classification also parallels between these fields. Consider Pluto, once the ninth planet in our solar system, now reclassified as a dwarf planet. Similarly, rare diseases can undergo reclassification, leaving patients and researchers navigating uncertainty. What constitutes rare? Ultimately, everything exists on a continuum. Daval highlights that, despite these challenges, observational science should always come first—whether we’re studying a planet, a person, or a disease.
“Sometimes we get caught up in these definitions, and we forget to do the science of the planet, person, or disease itself.”
Finding Solace and Sharing it with the World
Daval’s journey is not just one of scientific discovery but also personal resilience. He finds solace in the world of ideas and the far-off wonders of the universe. But he doesn’t let his condition define him or limit his ambitions. In addition to his academic pursuits, Daval enjoys go-karting with his university society and has even participated in the British Universities Karting Championships. His message to others living with rare conditions is simple yet powerful:
“Don’t let it stop you.”
Daval is also a passionate advocate for better support and resources for those living with EB. To pursue this mission, he has worked with Medics for Rare Diseases (M4RD) as a patient ambassador. M4RD will also join Rarefest24 as an exhibitor, showcasing their fantastic recent work on rare disease red flags. Daval has also served as a patient ambassador, particularly with DEBRA, a charity supporting those with EB. One of DEBRA’s current goals is to make resources and help more accessible to patients with EB.
Join Daval at RAREfest24
At Rarefest24, on the evening of Friday 22nd of November, Daval will host an exciting Q&A session about space, planets, and his work in planetary science. This event is not just an opportunity to learn about the fascinating world of exoplanets but also a chance to explore the unusual parallels between these distant worlds and the rare conditions that affect so many people. If you’ve ever wondered what it’s like to study the mysteries of the universe—or how those mysteries can reflect life’s challenges on Earth—Daval’s session is one you won’t want to miss.
As Daval says,
“The universe is full of wonders, and so are we.”
Don’t miss this stellar opportunity to explore the cosmos and the human spirit with someone who embodies the best of both worlds. After all, when it comes to the mysteries of space and rare diseases, there’s always more to discover.