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VOL 3. NO. 36 Monday, September 24 - Sunday, September 30, 2001
AFRICA
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HEALTH-LIVING WHOLE
Working Is Struggle For Adults With Sickle Cell Disease
By Anissa ANDERSON ORR
September is Sickle Cell Disease Awareness Month

Two decades ago, many people with sickle cell disease did not live beyond age 20.

Screening for sickle cell disease at birth, improved health care, new medications and treatments now enable patients to live to much older ages. But adulthood brings another set of challenges for sickle cell patients, who must struggle to support themselves as they cope with unpredictable recurrent pain episodes.

"Keeping a job is very difficult for patients with sickle cell disease," said Dr. Mark Udden, an associate professor of medicine at Baylor College of Medicine. "Patients often can't predict when they are going to have debilitating pain episodes, also called crises. As a result they frequently lose work time, or they can't get jobs in the first place because they can't get the insurance associated with the job."

Sickle cell disease is an inherited disorder that causes red blood cells to become hard and pointed instead of soft and round. Pain episodes occur when the red blood cells stack up and cause blockages that deprive the organs and tissue of oxygen-carrying blood.

Although many patients have painful episodes less than once a year, some are sick more often and may be hospitalized more frequently.

"The pain can last only a few hours, or many days," Udden said. "For especially severe, ongoing pain, the patient may have to be hospitalized and treated with potent pain medicines and fluids."

People with sickle cell can pursue a wide variety of occupations if they closely manage their disease, according to Udden. However, he does not recommend jobs requiring strenuous physical exertion, exposure to high altitudes, or extreme temperature variations, which may trigger pain attacks.

Prompt treatment of infections and preventing dehydration may help prevent sickling of red blood cells, which causes pain crises. Employers can make work a less stressful experience for sickle cell patients by making a few accommodations:

  • Allow sickle cell patients to take frequent water breaks or keep a water bottle with them at all times. Staying well hydrated helps prevent pain crises in sickle cell patients. Sickle cell patients can also avoid pain crises by not becoming overheated and avoiding cold temperatures. However, many pain attacks occur without any known cause and are unpreventable.
  • Understand absences. Severe pain episodes may require sickle cell patients to be hospitalized.
  • Give sickle cell patients frequent rest breaks. Sickle cell patients may tire before others because of their anemia.

"In addition to pain, adults face increased complications from their disease such as damage to the kidney, liver, lungs and heart, and hip problems that can require hip replacement," Udden said. "We recommend that once a patient with sickle cell makes the transition from child to adult, they continue regularly seeing a specialist to keep them in good health and help them lead an active life."

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