Maintenance for Adults with Sickle Cell Disease

New medical treatments and knowledge are becoming better known through research resulting in longer life for those affected with sickle cell disease. It is advisable that any chronic snoring or short periods of not breathing (sleep apnea) during sleep should be reported to the medical caretaker immediately. These may contribute to some of the lung and chest problems that are found in adults. It would help to treat them early.

Many individuals with sickle cell disease can live for long periods without experiencing severe symptoms of the 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 has been history of some who have lived to 90 years of age.

Ideal practices and approaches to optimal care maintenance 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 of this information will help the adult with sickle cell disease to understand the disease and their individual ideal ranges.