|September is Sickle Cell Disease Awareness Month
Two decades ago, many people with sickle cell disease did not live beyond age
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
"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
- 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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