Living with Osteogenesis Imperfecta, or brittle bone disease, presents unique challenges when it comes to exercise. For me, as a disabled artist, maintaining mobility and staying healthy are crucial, not only for my physical well-being but also for keeping my creative energy alive. Traditional exercise isn’t an option—my muscles are often stronger than my bones, and overexertion can […]
Living with Osteogenesis Imperfecta often means that simple tasks, like buying a new car, become monumental undertakings. As a disabled artist who relies on a wheelchair for mobility, I faced unique challenges in finding an accessible van that could meet my needs. After years of driving my trusty Toyota Sienna, it was time to upgrade to a van […]
Let’s talk about fashion and functionality—a real challenge for many of us with Osteogenesis Imperfecta (OI), also known as brittle bone disease. As a disabled artist, my body has unique proportions and limitations, which means finding clothing that fits, feels comfortable, and reflects my personal style can be a daunting task. While many of us living with bone disease know the […]
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 […]
Living with Osteogenesis Imperfecta (OI)—commonly known as Brittle Bone Disease—has shaped my life in countless ways, but it has never defined my potential. From a young age, my parents instilled in me a drive to push past limitations and contribute meaningfully to the world. This mindset has been a cornerstone of my journey as a disabled artist, helping me transform obstacles into […]
Living with Osteogenesis Imperfecta (OI), or brittle bone disease, means navigating a world where broken bones are frequent and pain is a constant companion. By the time I was ten, I had experienced over 500 fractures. Despite that staggering number, I’ve managed to avoid regular use of narcotics—a choice rooted in my desire for long-term health and […]
This is a question I get asked all the time. The short answer is no. In fact, I rarely visit the hospital for a broken bone. Growing up with Brittle Bone Disease has taught me a lot about managing fractures without the need for emergency room trips. Why I Don’t Go to the Hospital A Family […]
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 […]
Parents of children with Osteogenesis Imperfecta are often charged with child abuse, simply because their kids always turn up with broken bones. My muscles can break my bones when they contract, making it seem like my bones break at random. You can see where, especially if a child has a lower severity of OI, parents […]
Living with Osteogenesis Imperfecta (OI)—also known as Brittle Bone Disease—comes with unique challenges, particularly for those of us with short limbs, limited mobility, and fragile bones. Over time, adaptive technologies have made navigating these challenges more manageable. Here are ten game-changing gadgets that have made a difference for me and others in the disabled community. 1. Electric Wheelchairs […]
