Rare genetic disorder causes brittle bones, but can’t break his spirit
ListenIn this week’s Patient Files, 25-year-old Scott Clifford talks about living with Osteogenesis Imperfecta, or brittle bone disease.
The Pulse’s Patient Files series explores your stories of illness, recovery, health and coping. In this week’s edition, we talk with Scott Clifford, a 25-year-old filmmaker and writer with a rare bone disorder that affects every aspect of his life and leaves him confined to a wheelchair. He accepts the challenges he faces with frustration, humor and tenacity and says that in the end, he’s really just a guy with flaws, like everybody else.
During his junior year of college at the University of the Arts, Clifford was cramming for finals. He was at the school library, functioning on too little sleep. He admits he was paying too much attention to his phone and not enough attention to where he was going, when he fell down some steps at the library.
For most college-aged students, cell phone distraction is a way of life and the fall would have resulted in a few bruises at most, but Scott has osteogenesis imperfecta (OI), a rare genetic disease that causes fragile, brittle bones and keeps him confined to a wheelchair.
When he crashed down the stairs, in his chair, he knew he probably faced multiple broken bones, painful surgeries to repair them and a long hospital stay. What worried him most, though, was flunking the semester.
Even as the adrenaline wore off and the pain kicked in, he says he was angry and frustrated that he was “lying face down on the floor of the university’s library,” while everyone else was studying.
While it was too late to avoid the the medical consequences, he was not about to let the semester go down the drain.
You can listen to Cifford’s first-person account of the accident and read his essay, Fragile bones, thick skin — 3 steps from comedy to emergency, here on NewsWorks.
Clifford’s films and videos are available on Vimeo.
WHYY is your source for fact-based, in-depth journalism and information. As a nonprofit organization, we rely on financial support from readers like you. Please give today.