Beyond Limitations

Osteogenesis Imperfecta, Kennedy Krieger InstituteIn Rosalind Chen’s home country of Taiwan, Osteogenesis Imperfecta (OI)—commonly referred to as brittle bone disease—is so rare that some physicians haven’t even heard of it, let alone been properly trained to diagnose and treat it. Consequently, the disease—which not only causes extremely short stature in patients, but also makes them highly susceptible to broken bones—has only recently gained attention there.

Rosalind herself has a severe form of OI. Aside from having brittle bones, her height limits her ability to move around and she uses two crutches to improve mobility. She is always at risk for a fracture should she stumble or have an accident. But she doesn’t let that stop her from living a full and active life.

I first met Rosalind earlier this year, when I traveled to Taipei, Taiwan, to attend and speak at a conference that she had organized to in hopes of spreading awareness about brittle bone disease and promoting better care for patients like herself in Southeast Asia. Since meeting her, I have been amazed at her complete mobility and her ability to interact with others. It’s as if she has no disability.

Moreover, what’s most impressive about her is her singular desire and effort to participate on all levels of life without regard for her disability. Quite a remarkable and accomplished young lady, she is thoroughly engaging and active in her work, as a successful researcher in Taipei, studying health issues confronting the elderly.

Rosalind is a superb example of how people with significant disabilities overcome obstacles to function on the same level as any individual without brittle bones. She is not a stay-at-home, neither intellectually or physically. Her success both professionally and socially completely surpasses her disability and enriches not only her experience but those of people who work with her.

For other patients—particularly children who don’t have an idea of how they may progress into adulthood—people like Rosalind are marvelous examples of what people can accomplish when they turn their disability to their advantage. Rosalind, for instance, was one of the prime organizers of the Taiwan conference I attended, which attracted more than 200 patients, physicians, and health care workers.  

Many patients with this disorder are in wheelchairs, but still manage to do big things. Many of our patients—including some with a more debilitating level of OI than Rosalind—have gone on to become lawyers, physicians, teachers, and successful in business. Ultimately, however, it’s the person’s decision as they’re growing up whether they’re going to cave in to a disability or move beyond its limitations. Among these patients, Rosalind is not necessarily unique. Still, she is clearly outstanding in her efforts and accomplishments, and provides a perfect example how an OI patient can view the world as full of opportunity.

Dr. Jay Shapiro is Director of the Osteogenesis Imperfecta Program at Kennedy Krieger Institute.

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