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Sickle Cell Disease

Happy couple hugging.

Sickle cell disease, also known as sickle cell anemia, is an inherited disorder that affects an estimated 100,000 Americans. While sickle cell disease can affect anyone, it is most common in people whose ancestors came from Africa, the Middle East, India and Spanish-speaking regions in the Western Hemisphere (Central and South America except Brazil, Spain and the Caribbean). Currently, the only potentially curative treatment available for sickle cell disease is blood and marrow transplant.

The University of Kansas Cancer Center is uniquely qualified to support patients with sickle cell disease through transplant. As 1 of fewer than 60 National Cancer Institute-designated comprehensive cancer centers in the nation, we offer unparalleled expertise in using blood and marrow transplant to treat both cancerous and noncancerous blood disorders, including sickle cell disease. In our program’s history, our team has performed more than 4,000 transplant procedures, including the first in Kansas to treat adult sickle cell disease.

  • When the cells stick to the blood vessel walls and disrupt the delivery of oxygen to tissue, acute severe pain occurs. This can be sharp, intense, stabbing or throbbing pain. The most common areas of pain include the abdomen, arms, chest, lower back and legs.
  • In addition to acute pain episodes, many teens and adults living with sickle cell disease also suffer from chronic pain.
  • Anemia in people with sickle cell disease is usually mild to moderate. However, severe anemia can occur and be life-threatening.
  • Sickle cells often damage the spleen, an organ necessary for fighting infections. With a damaged spleen, people have increased risk of infections such as meningococcus, staphylococcus, salmonella and haemophilus influenza type B.
  • When sickle cells infect the lungs, oxygen levels drop. This causes damage to the lung tissue and can result in chest pain, coughing, fever, shortness of breath and rapid breathing.
  • When oxygen delivery to the brain slows or stops, this can result in a stroke or stroke-like symptoms. This can include memory issues, difficulty thinking and processing information and more.
  • A lack of oxygen delivery from sickle cell disease can damage the blood vessels and retinas in the eye. This can cause light-sensitivity as well as visual impairment or loss.
  • Lack of oxygen in the blood vessels can contribute to heart problems, such as an enlarged heart. Frequent blood transfusions can also contribute to heart damage.
  • Damage from sickle cells in the blood vessels of the lungs can make it harder for the heart to pump blood to this area, causing an increase in lung blood vessel pressure. This can cause shortness of breath and fatigue.
  • The kidneys are sensitive to changes in the blood by sickle cells and this can affect the production of concentrated urine. As a result, you may experience frequent or uncontrolled urination. Liver damage is also common.
  • As the disease progresses, small sores can develop on the legs. While some will heal quickly, others can take long time periods to heal or not heal at all.
  • Sickling in the bones can also occur and is most common in the bones of the hip, shoulder, knees and ankles. This occurs in teens and adults and can lead to severe joint damage or the need for joint replacement.
BMT patient Desiree Ramirez

A future without limits

Desiree Ramirez faced a lifetime of hospitalizations and limitations – until she became the first Kansas adult to receive a stem cell transplant to cure sickle cell disease.

Desiree's story
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