OI:Patient Stories-Timothy Roberts
Growing up with OI was difficult. Although I was relatively independent and ambulatory, I fractured often. I wore braces/ used crutches and had bowed legs, all of which were a source of embarrassment in childhood. I could never run, invariably breaking my legs when I’d try to keep up with my friends. It was a very humbling experience, but one that fostered my interests in other hobbies like science, music and art. I loved video games and found other outlets for socializing besides sports. I loved to swim. This was encouraged by my doctors and my parents. The day we finally got a pool is perhaps one of my fondest memories.
My experiences with OI doctors has been nothing short of life-changing. Since birth, I’ve been followed closely by teams of professional, caring physicians, surgeons, therapists and nurses, all of whom provided me the utmost level of care and consideration. I grew up under the care of the Shriners system, participating in—and benefiting greatly from—early bisphosphonates trials. In 2007, I came to the OI clinic at Kennedy Krieger Institute where I worked for a summer on various OI related projects. I truly enjoyed the experience, researching a disease about which I am passionate, meeting and helping other patients like myself. It’s been a rewarding— and humbling—experience.
In my experience, the benefits of modern OI therapies are nothing short of life-changing. In my 6 years of bisphosphonate treatment, I’m told that I practically quadrupled my bone density. As I child, I fractured around 5-10 times a year, spending many months at a time on crutches or in a wheelchair. Today, I am fully independent; I can walk, run, play sports, lift weights, and only rarely do I fracture, perhaps once in the past three years. Although I benefited from changes at puberty, I owe much of my strength to the cutting-edge drug therapies being used and developed for OI. Last, my rewarding experience with my doctors has truly shaped the way I look at the world.
I am currently studying to be a doctor, hoping one day to treat and care for my patients in the same way I was healed.
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