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A national conference on birth defects, developmental disabilities, disability and health, and hereditary blood disorders was held in Washington, DC, in late July 2004 for health professionals throughout the United States. Sponsors of this meeting included the Centers for Disease Control and Prevention, Special Olympics International, The American Association on Health and Disability, The March of Dimes Foundation, The National Association of County and City Health Officials, and The Task Force for Child Survival and Development. The theme of the conference was “Navigating Our Future: Aligning Strategies and Science.” This issue of the Journal contains articles based on presentations from the 3-day conference. During these meetings, presenters addressed a wide range of topics, including our efforts to prevent those birth defects and developmental disabilities we know how to prevent and to identify the origins of the many disorders for which the causes remain unknown. Importantly, the conference also highlighted the public health activities associated with improving the health of people living with disabilities. These activities include improving strategies for early detection of and treatment for secondary conditions, creating policies that minimize barriers to care, improving the quality of life among people with disabilities, and managing such prevalent and frustrating auxiliary problems as caregiver burnout. In the United States, we know that 1 in 3 babies will be born with a condition that qualifies as a serious birth defect. A serious birth defect is defined as one that is life threatening or that requires significant corrective treatment. Although important advances have occurred in the treatment of children with various birth defects, such treatment may not lead to a normal life span or one that is free from limitations in activity or intellectual capacity. With developmental disabilities, the picture is not as clear. This group of mental or physical impairments becomes evident sometime before a person reaches the age of 22 years; may have been acquired before, during, or after birth; and may result from the effects of an injury or an infectious or chronic disease.1 Concentrated efforts to conduct surveillance for developmental disabilities have been made only in the last 15 years, and many of the findings from this surveillance relate to effect rather than cause. One study estimated that 8% to 16% of all US school-age children have “difficulties that justify specialized educational services.”2 More recently, scientists have reported that developmental disabilities were the “fifth leading cause of nontraumatic death for children between 1 and 14 years of age and the third leading cause of nontraumatic death for children between 15 and 19 years of age.”3(p412) These studies continue; meanwhile, the efforts of the scientific community also continue to intensify, focusing on preventing these conditions altogether. Identifying and resolving the public health needs of people with disabilities is a relatively new area of focus for public health. It is estimated that 15% to 20% of the population has a disability and that these disabilities represent yearly medical costs to society of $170 billion.2 A disability can result from various underlying health problems, including birth defects, developmental disabilities, injuries, or chronic diseases. For people living with a disability, the public health focus is on how to improve health and wellness and to prevent secondary conditions (such as physical inactivity and obesity) that appears to be more prevalent in this population. The huge area of birth defects, developmental disabilities, and disability and health represents a daunting challenge to the US scientific, public health, and public policy establishment. How do we prevent birth defects, developmental disabilities, and blood disorders as we continue to try to deal effectively with the other urgent needs that face public health? This question and many others were discussed in the Washington conference in July. When I try to put a face to these issues in the United States, I immediately think of an amazing woman named Martha Mason. Stricken with polio at the age of 11, Martha has lived 55 of her 66 years in an iron lung. At this point, she is believed to be the longest-term survivor of continued occupancy of an iron lung in the world. In her recently published book, Breath: Life in the Rhythm of an Iron Lung, Martha says, “I live with a stable of nightmares, but hope keeps them in harness.” 4(p269) Martha’s story is a tribute to her medical care-givers, her family, and her community. But most of all, what comes through to the readers of her book is the awareness of an incredibly strong personality, which simply refuses, on a daily basis, to acknowledge defeat. Her friend, Charles Cornwell, observes in the Introduction to Breath, [We remark] on Martha‘s ability or capacity or power or determination or grace to transcend the limitations of the body that failed her long ago, thereby revealing the beauty and truth to be found in the human spirit. . . . The way people cope with limitations determines everything that follows in their lives—and, most of all, their impact on others. Martha Mason’s is a compelling story about a courageous woman who has refused to allow herself to be defined by either the virus that attacked her or the destruction it left behind. It is a story of hope and heroism.4(p13) For Martha and others who refuse to let their disabilities render them unable to lead productive, fulfilling lives, the medical, public health, and public service communities direct their efforts both to preventing birth defects, developmental disabilities, and blood disorders and to dealing effectively with these conditions as they occur, in order to provide the best quality of life possible for all those affected. The contents of this issue of the American Journal of Public Health speak to that effort. |
