Many individuals with sickle cell disease can live for long periods without experiencing severe symptoms of the disease. Awareness and research of the disease, applications of therapies discovered from research studies, and improved use and availability of health care have contributed to improved use and availability of health care resulting in longer lives for individuals affected with sickle cell disease. Contrary to previous estimates, a large percentage of individuals with sickle cell disease survive beyond the age of thirty or forty. A growing segment of adults with sickle cell disease live to fifty or sixty years. There was even an adult female with sickle cell disease who lived to 91 years of age.
Ideal practices and approaches to optimal health care maintenance for adults with sickle cell disease include "well-patient" care coupled with a positive outlook. This means that visits to the hematologist or primary doctor should not be isolated to “sick visits”. Well-patient medical follow-up visits provide a better psychological setting between the health care provider and the adult with sickle cell disease. Well visits help the medical caretaker to become familiar with your normal, healthy, physical and laboratory studies. This should provide more effective health maintenance and preventive coping skills. Development of such relationships allows both the health care provider and the individual with sickle cell disease to compile individualized information for better health maintenance and prevention.
Individuals with sickle cell disease should always request a copy of their complete blood count, reticulocyte count, hemoglobin electrophoresis and special testing or x-rays from lab work recently done. Medical records with immunization updates should also be obtained. Some of the special testing should include screening for blood cell antibodies, pulmonary function tests, electrocardiograms (EKGs), studies to detect the presence of gallstones, magnetic resonance imaging (MRI) and scans of the femoral and humeral heads to detect necrosis or bone tissue deterioration. Since individuals with sickle cell disease are at high risk for developing retinopathy (eye disease); they should also request information from tests done by their ophthalmologist. All this information will help the adult with sickle cell disease to understand the disease and individual ideal ranges.