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Patients living with juvenile diabetes experience both the joy of life and a constant threat of serious complications

When insulin was introduced in 1922, it dramatically improved the lives of emaciated youngsters with diabetes who had been kept barely alive through "starvation diets." Insulin transformed juvenile diabetes, or type 1 diabetes mellitus, from a fatal disease into a chronic and often debilitating condition. Now those with juvenile diabetes can live near-normal lives if they carefully watch their diet, exercise, and take their medication. Yet they still face long-term damage to their eyes, kidneys, and blood vessels, as well as the daily burden of living with a chronic illness.

Attitudes adopted early toward their illness can lead to emotional and ethical predicaments, notes Chris Feudtner, Ph.D., of the University of Washington School of Medicine, in a recent commentary. These predicaments, which arise chiefly from living in the shadow of a threat to health, frequently involve issues of control, stigma, risk, and responsibility. First, how can a patient live with a danger that eludes full control, and how can a sense of safety be enhanced without resorting to false reassurances (you won't have any complications if you do everything right), magical thinking, or judgmental moralizing (you wouldn't have had these complications if you had watched your diet and medication more closely).

Second, how can health care mitigate the stigma that accompanies life-threatening conditions, reducing its detrimental effects on self-concept and preventing social injustice? The author gives an example of how one patient almost did not get a job because a previous diabetic employee, who did not control his diabetes, had slipped into a diabetic coma several times on the job.

Third, how can risk assessment be incorporated into a vibrant care plan, allowing patients to move ahead joyously with life while addressing the threat of future dangers? Finally, how should the responsibility for the complications of diabetes be apportioned between patients and physicians?

Dr. Feudtner, whose work is supported by the Agency for Healthcare Research and Quality (National Research Service Award training grant T32 HS00009 and HS07476), notes that advances in medical therapy will continue to keep patients with chronic diseases living longer in states of what she calls "dangerous safety." Dr. Feudtner calls for a change in our fundamental perspective on health needs to integrate the inescapable threats of illness and death into the concept of a well-lived life.

More details are in "The predicaments of 'dangerous safety': Living with juvenile diabetes in 20th century America," by Dr. Feudtner, in the July 2000 Western Journal of Medicine 173, pp. 64-67.

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