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Understanding Sickle Cell Disease
w/ Chris Wells, MSW
September is National Sickle Cell Awareness Month, a time during which the public is informed about this blood disorder. Statistics show that 1 in every 32 African Americans are born with the sickle cell trait and 1 in every 365 African Americans are born with sickle cell disease. AFIYA Magazine received the opportunity to sit down with Chris Wells, MSW, client program director of the Sickle Cell Foundation in Tallahassee, FL to learn more sickle disease and what resources are offered to the community regarding this disorder.
Sickle Cell Disease is hereditary disease and can not be transmitted from one person to another. “Sickle cell disease itself is a rare blood disorder called hemoglobinopathy which affects the red blood cells,” says Chris. “This causes some of them to have a sickle shape instead of a round shape and to die a lot quicker than normal shaped cells.” This early death of the cells and loss of oxygen is what causes most of the health issues. Some of the common symptoms of sickle cell disease are pain, organ failure, strokes, infections, eyesight problems, and a whole host of other issues. However, the most common thing is the pain that most people experience. “People with sickle cell disease will have pain episodes, also known as Sickle Cell Pain Crises,” says Chris. “When these episodes are severe, often times the person will be hospitalized or rushed to the ER to seek immediate assistance.” Those with the sickle cell trait, do not show symptoms in most cases, although there are those rare occurrences.
Individuals born after 1988 received a screening for sickle cell, along with other disorders, due to the Newborn Infant Screening Act which was put into place in Florida and several other states across the country. “Results of these screenings are sent to the parents of newborns with sickle cell disease so that they can be linked to the necessary resources and services they will need,” shares Chris. “Parents who have a child who only has the trait also receive a letter which explains that there are typically no symptoms associated with the trait.” Those who were born before 1988 and have questions about it can speak with their doctor about having a blood test done which whether or not the trait is present and what type of trait it is, if so.
Parents who are informed that their child has sickle cell disease should begin to seek a permanent form of medical attention, such as a hematologist that he/she sees regularly. Parents should also become educated on the disease, develop a good support system to assist with doctor appointments, and learn to find strength to help with the difficult times that may arise.
Learning how to cope with sickle cell disease on a day-to-day basis is an important part of the disease management process. Along with taking pain medication as needed, healthy living can be beneficial, and there are some key tips that could be helpful to those living with or caring for someone with sickle cell disease. Learning to manage stress and remain calm in tough situations is an important one. “Staying hydrated, eating a healthy diet and including a lot of leafy, green vegetables are all very good practices to have, as well,” Chris adds.
The Sickle Cell Foundation in Tallahassee, FL provides direct services to families and individuals in the area who are living with Sickle Cell Disease. Some of these services include limited financial assistance, support groups, one-on-one counseling, and anything else that the clients may need. Chris shares, “We also offer education and resources to the community through health fairs, presentations, service trainings, and whatever else we can do to spread the word about Sickle Cell Disease and how it affects our community at-large. The common misconception is that if you don’t have sickle cell disease, then it doesn’t affect you, but there are a lot of people who live silently with the disease are still a part of the community that we share so it’s something that we need to understand and be educated on”
Those who reside in Tallahassee, Florida can take part in upcoming events which the foundation is holding this September for National Sickle Cell Awareness Month. “We will be having our Annual 5K happening on Saturday September 12th,” Chris says. All registration fees and donations go directly to clients of the Sickle Cell Foundation to assist them with their financial needs. They will also be hosting a community breakfast and educational events to increase the awareness of sickle cell disease in the Tallahassee community.
For more information on the Sickle Cell Foundation of Tallahassee, FL and their upcoming events, visit www.sicklecellfoundation.org.
P.O. Box 5201
Tallahassee, FL 32301