In honor of National Sickle Cell Awareness Month, Living Well spoke with people whose daily lives are affected by sickle cell anemia, to give us all some insight on what it is like coping with the disease.
What is sickle cell anemia, who is at risk and how does it affect the human body?
Sickle cell anemia is the most common form of sickle cell disease. Normal blood cells are round, soft and flexible but when a person has sickle cell disease, the blood cells resemble the curved shape of a banana or the crescent of the moon. Sickle cells are stiff and sticky. They tend to block blood flow in the blood vessels of the limbs and organs. Blocked blood flow can cause pain and organ damage. It can also raise the risk for infection. Sickle cell trait affects 1 out of 10 African Americans. Sickle cell anemia is passed down or inherited when both mother and father are carriers of the sickle cell trait, making it a 1 out of 4 chance their child will be with the disease. Testing for sickle cell disease at birth is mandatory in the state of Michigan. If the disease is caught early in infants, physicians can prescribe penicillin twice a day to help the baby from developing a severe infection. Dr. Wanda Shurney, chief executive officer and medical director of the Sickle Cell Disease Association of America (SCDAA) – Michigan Chapter and daughter of Dr. Charles F Whitten, cofounder of the National SCDAA, explains the pain behind sickle cell anemia. Dr. Charles F. Whitten founded the Sickle Cell Disease Association of America, because there was information about the disease that was not being used to benefit the patients. Dr. Whitten also initiated the comprehensive clinic at Children’s Hospital in Detroit. The clinic focuses on multidisciplinary care for children providing a complete medical home. His daughter Dr. Shurney, has furthered his legacy by focusing on the Michigan Chapter with a holistic approach to healing.
The Michigan Chapter of SCDAA is located at 18516 James Couzens in Detroit. Dr. Shurney and her staff use heat, relaxation and massage in addition to powerful narcotics and the medication hydroxyurea to assist patients who are dealing with pain associated with sickle cell anemia. Studies have shown hydroxyurea can increase fetal hemoglobin, in turn causing a decrease in pain episodes. “The pain is something one cannot begin to imagine,” explained Dr. Shurney. Pain associated with sickle cell anemia is caused by blockage of the blood vessels, due to the sickled shape blood cells. These blockages can occur in any part of the body, from the brain where a blockage can cause a stroke to the hands and feet where in addition to the pain, the blockage causes swelling. Tanashia Darnell says, “Sickle cell is a challenging disease and a learning process.” As an adult she recalls growing up with the disease as being “not as hard as expected, my mother was hands on and I received top of the line care at Children’s Hospital.” Ms. Darnell uses heat, massage and rest to get through her pain caused by sickle cell anemia. Despite the condition, she remains optimistic and says, “It’s not horrible, you can get through anything.” The only cure for sickle cell anemia is a bone marrow transplant. There is a 1 in 4 chance a full blood brother or sister is a donor match. This makes it difficult to find a donor and there is a chance of the bone marrow being rejected.
For children, the disease presents a greater challenge in that dealing with the pain and trying to complete schoolwork can be very challenging. Through Project Enrich, a local program focused on helping to improve the quality of life for children living with sickle cell anemia, Dr. Shurney and her team tutor children who may miss class as a result of their condition and need help catching up. Kelly Littlejohn’s son, Allen, is a participant in Program Enrich. Allen describes his challenges with school and coping with the pain: “ It’s more difficult for me since I am out of school for a while and have to catch up on everything we did.” Littlejohn helps his son manage his pain by asking where he is having pain and assessing the pain level. Allen finds relief in heating pads and massages but he is also taking hydroxyurea. With this medication, Littlejohn has noticed an improvement in Allen’s health. Like Tanashia Darnell, Allen maintains a positive attitude in managing the condition. “It’s not so bad, if you stay strong,” he says. You can find Littlejohn and Allen’s documentary on Facebook at Fullfill the Cell Foundation Inc. This Saturday, September 27, please join the Sickle Cell Disease Association of America – Michigan Chapter for the 1st Annual Sickle Cell Awareness and Myth Dispelling Walk at the Detroit Zoo. Registration begins at 8:00 a.m. and the walk begins at 9:00 a.m. sharp. For more information please contact SCDAA at (800) 842- 0973.