Individuals with OI not only endure, but persevere. They often develop a determination and tenacity far beyond that of a person who has never had to overcome seemingly insurmountable odds. People with OI develop an incredible sense of self determination and self reliance. They expect to be treated just like everybody else and they demand the same opportunities available to all citizens.
Once they understand through life experience that independence can be gained, individuals with OI rarely use their disease as an excuse to avoid full participation in life or to limit their enjoyment of life. They work hard to make their lives as normal as possible. They understand how physical limitations define who or what they are, or who they will become.
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. Encouragement for people with OI to become independent is increasing. Young persons with OI today have role models for independence and self-reliance.
|
