One of the most common treatments for individuals with Osteogenesis Imperfecta (OI), also known as brittle bone disease, is rodding surgery. This procedure involves inserting metal rods into the long bones to strengthen them and reduce the frequency of fractures. For those living with OI, a major challenge is that their bones develop abnormally. This results in bowed limbs […]
As a Louisiana artist living with Osteogenesis Imperfecta (OI), or Brittle Bone Disease, I’ve often reflected on a question I see frequently in chronic illness and disability communities: “Does your disability define you?” At first glance, it seems simple, but the more you unpack it, the more nuanced it becomes—especially when living with a condition that profoundly shapes your daily life. The […]
As a disabled artist living with Osteogenesis Imperfecta (brittle bone disease), my daily life often looks different from what most people expect. For me, lying flat on hard surfaces—like my kitchen table or counter—is not only functional but also essential for my comfort and productivity. This unconventional choice surprises many, but it’s what allows me to paint, type, and […]
Living with Osteogenesis Imperfecta—also known as Brittle Bone Disease—means doing everyday tasks in ways that might seem unusual to others. One of the most common concerns people express about me is the way I eat: lying down on my side. Yet, after nearly 29 years of eating this way without incident, I’d say my track record speaks […]
As a disabled artist living with Osteogenesis Imperfecta (OI), also known as Brittle Bone Disease, I’ve learned to adapt to the challenges that come with living in a body that feels every shift in the weather. Days like today in New Orleans—75 degrees, full sun, and a refreshing breeze—are bittersweet. While I enjoy the cooler air and the vibrant energy […]
As a watercolor artist with Osteogenesis Imperfecta (OI), also known as Brittle Bone Disease, my approach to art is as much about creativity as it is about adaptation. Living with chronic pain and physical limitations means I’ve had to develop unique methods to pursue my passion for painting—especially my watercolor animal art, which is inspired by my love for animals. […]
Today on Looking Up, I’d like to introduce you to a TRUE entrepreneur, Jane Hash, who just so happens to have Osteogenesis Imperfecta Type III like me. An activist, business owner, volunteer, podcaster, nutritionist, and blogger herself, Jane has truly done it all. Let’s get started! Hey Jane! First, I want to start off with […]
Living with a visible disability often means navigating more than just physical challenges—it means dealing with the unsolicited opinions, questions, and downright bizarre comments of strangers. As someone who uses a wheelchair due to Osteogenesis Imperfecta, I’ve heard my fair share of awkward, offensive, and unintentionally hilarious remarks in public. Sometimes, these interactions are a […]
Osteogenesis Imperfecta (OI)—often called Brittle Bone Disease—affects roughly one in 15,000 people. This genetic disorder causes bones to fracture easily and develop abnormally due to a collagen deficiency. It affects everything from bone strength to hair and nail growth. Beyond frequent fractures, many with OI also manage disability-related complications such as weak ligaments, hearing loss, and respiratory […]
