The majority of individuals with OI develop an incredible understanding of and sensitivity to the physical and emotional needs of others, for they have suffered many of the same problems at a younger age. However, they have a practical and matter of fact approach to problem solving. Rather than sympathy, they give practical advice and assistance with a “learn to suck it up and deal with it” attitude. People who have OI have become counselors, advocates, and members of other caring professions. Some have become managers, business leaders, public speakers, and even lawyers.
Osteogenesis Imperfecta is a rare and challenging disease. Medical knowledge of this disease and progress in diagnosis and treatment has grown slower over the years. Shriners Children’s Hospitals and the Osteogenesis Imperfecta Foundation, (OIF), have facilitated conferences and events at which individuals with OI can meet and learn from each other and from leading medical specialists in the fields of genetics and orthopedics. Encouragement for people with OI to become independent is increasing. Young persons with OI today have role models for independence and self-reliance.
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