This week marks Osteogenesis Imperfecta Awareness Week—a great opportunity to share a glimpse into life with this rare condition and how it intertwines with my passion for watercolor art and wildlife painting.
Living with Osteogenesis Imperfecta (OI), often called Brittle Bone Disease, has shaped my perspective and inspired my creativity in unique ways. Let’s dive into what OI is, how it impacts those of us with this condition, and how I’ve turned my experiences into a source of artistic expression.
What Is Osteogenesis Imperfecta?
The term “Osteogenesis Imperfecta” translates to “imperfect bone formation.” OI is a genetic condition caused by a collagen deficiency that prevents the proper absorption of calcium, leading to fragile bones. Collagen, a key structural protein, isn’t just for plump lips—it’s fundamental to our entire bodies, forming bones, skin, nails, hair, muscles, and tendons.
The hallmark symptom of OI is brittle bones, but it’s much more than just a bone disorder. It can also affect the heart, stomach, skin, hair, and even hearing. For instance, I’ve experienced hearing loss due to weak bones in my ears and deal with a slight heart defect that requires monitoring.
The Types of Osteogenesis Imperfecta
OI presents in varying severities, historically categorized into four main types:
- Type 1: The mildest form. People with Type 1 may live relatively normal lives with minimal fractures, sometimes remaining undiagnosed until later in life.
- Type 2: The most severe form, often fatal in infancy due to underdeveloped ribs and skulls, which impair lung and brain development.
- Type 3: My type, characterized by severe symptoms. I’d broken over 500 bones by age 10, use a power wheelchair, and rely on assistance for daily tasks.
- Type 4: A moderate form of OI that often leads to progressive mobility challenges, requiring aids like wheelchairs over time.
Living with Brittle Bones
Life with OI is a balance of challenges and adaptations. By age two, I began using an electric wheelchair, and I’ve had metal rods placed in my limbs to strengthen and straighten my bones. While fractures are still a reality, they’re less frequent and easier to manage.
Interestingly, one “perk” of OI is that we often heal faster than those with normal bone density. A rib fracture that might take six weeks for most people could heal in just one week for me.
Transforming Challenges into Art
Living with OI hasn’t just influenced my daily life—it’s also shaped my artistic journey. As part of my college senior thesis in graphic design, I created Looking Up, a book offering a visual insight into my perspective of living and creating art with OI.
My passion for watercolor painting stems from its fluidity and versatility, much like the unpredictability of life with brittle bones. Through my wildlife art, I aim to showcase the beauty of the natural world while raising awareness about rare conditions like OI.
A Lifelong Journey
There is no cure for Osteogenesis Imperfecta, and it’s a lifelong condition. Treatments focus on managing symptoms through physical therapy, surgical interventions, and medications like bisphosphonates, though these often come with side effects.
Despite its challenges, OI has taught me resilience and creativity. Whether I’m working on a wildlife watercolor painting or educating others about life with brittle bones, I hope to inspire awareness, empathy, and appreciation for the art and science of perseverance. Snag a signed copy of Looking Up from my Etsy store for 50% off!