What is sickle cell disease?

Sickle cell disease is a genetic blood disorder caused by the presence of an abnormal form of hemoglobin. According to medicine.net, the hemoglobin molecules aggregate after unloading oxygen; this then forms into long rod-like strictures that force the red cells to assume a sickle shape. Sickle blood cells cannot squeeze through small blood vessels. When the sickle cells block small blood vessels, the organs are deprived of blood and oxygen and this leads to the severe pain and damage to the vital organs.

June 19th is held as World Sickle Cell Day according to sicklecellanemia.ca.

September is actually National Sickle Cell Awareness Month (and has been since 1983). According to the National Institutes of Health.gov, Sickle Cell Disease is a genetic disease that researchers estimate affects between 90,000 and 100,000 Americans.

Not many people are educated about sickle cell disease and how it affects daily life progression and the immune system.

In an effort to shed light and provide insight, Winthrop alumna Aalayah Williams shares her young brother Caleb’s story about how the illness has affected his life, and how he overcomes the daily obstacles.

Shakora Bamberg: Tell me what you know about this disease.

Aalayah Williams: Sickle cell disease is a life-threatening blood disorder that is usually discovered at birth and a frequent attacker within the African-American community.

SB: Why are you so passionate about raising awareness?

AW: I have a younger brother who I watch struggle everyday as a victim of the disease.

SB: When did you learn about this disease?

AW: I learned about this disease after the arrival of my newborn brother when I was 10 years old; this was back in 2004.

SB: How have you personally been affected, and how do you plan to face this disease head on?

AW: I watched my brother fight it and have seen first-hand all of the complications it has caused him. From this, I plan to join him in his plan of action to provide awareness for the disease.

SB: Tell me about your YouTube video and attending awareness health programs to learn more about sickle cell.

AW: It was his idea to create the music video. He likes to sing and our younger brother loves to rap, so they thought a music video would get people’s attention to force them to research sickle cell. We also attend classes and programs on the disease frequently. Every year Caleb attends a camp for children who fight the disease; I volunteer as a camp counselor every year as well.

SB: What else would you like to share? Is this disease preventable and curable?

AW: No, unfortunately it is not curable.

SB: What is your brother’s platform as he continues to battle sickle cell?

AW: He wants to fight to ensure that every child feels important. Caleb has faced pivotal moments where he felt like he was not as good as his peers at different tasks because he endured difficulties with sickle cell.

AW: The video is called Caleb on Sickle Cell on my YouTube channel (Aalayah Williams). We made this video two years ago on August 31, 2014.

SB: Is there anything else you’d like to share about this disease?

AW: Please, please, lease, do your research on this disease. There is so much information about it that is out there for those who desire to learn about it.

SB: If you or a family member is battling this illness, please become more educated and seek medical attention so that you can manage this disease. Some treatments include: medications, blood transfusions, and rarely a bone-marrow transplant.

According to the Mayo Clinic people may experience:

Pain areas: in the joints

Pain types: can be sudden in the chest

Whole body: dizziness, fatigue, low oxygen in the body, or malaise

Urinary: inability to make concentrated or dilute urine or blood in urine

Also common: abnormal breakdown of red blood cells, delayed development, inflamed fingers or toes, pallor, shortness of breath, or yellow skin and eyes

It is our hope that one day someone will find a cure to sickle cell disease.