Helping those with sickle cell disease

Published 6:26 pm Thursday, September 16, 2021

September is Sickle Cell Disease Awareness Month, and a local activist is making sure those fighting this silent disease have the blood donations they need.

The COVID-19 pandemic has caused many shortages during its year-and-a-half run. One vital one is blood due to a lack of blood drives during the lockdown.

Ayana Johnson is a 15-year-old Suffolk native who was named the Sickle Cell Disease Association of America Inc.’s 2021-23 Teen Ambassador in July. Ayana has fought the disease herself ever since she was born.


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“It affects my daily life, even if I don’t feel pain,” she said. “I have to medicate properly to reduce the pain. I also have to make sure I wear the proper attire, because extreme weather can cause pain. I modify what I can do, especially if I have dance that night. I might have to leave school early or bring a heating pad. There’s a lot of little things that you have to consider.”

Sickle cell disease is a life-threatening, genetic disorder most common among Blacks but seen in many races, including people from South America, South Asia, southern Europe and the Middle East causing many acute and chronic complications requiring medical attention. It is a rare genetic disease where blood cells are hard and “C” or sickle-shaped instead of soft and round, making transferring oxygen around the body hard and sometimes painful. This abnormality can cause symptoms including pain, fatigue, swelling, anemia, organ damage, jaundice, stroke and premature death.

There is currently no cure for this rare blood disease. Those who suffer from it rely on regular blood transfusions to prevent complications like organ and tissue damage and strokes. According to Ayana, the transfusion rate depends on the person. It can range from weekly to monthly to only when needed. The main thing is that blood has to be available for the transfusion.

“The reason we need minority donors is because they have enzymes in their blood that match up when paired with blood from another minority,” said Ayana.

According to the Red Cross, sickle cell patients need blood that is most compatible with theirs, which generally comes from someone of the same race or ethnicity. Even though Black people make up 13% of the American population, less than 3% donate blood. Also, the majority of Black people are type O positive, which is the first type to run out in a shortage.

Ayana says there are fun incentives for donating blood. For example, there are snacks for those who give at blood drives, while some have other incentives like T-shirts or gift cards depending on the drive and its sponsors.

“When I have volunteered with the Red Cross, they have light snacks and something to drink for those who donated,” said Ayana. “This will help stabilize your blood sugar and fluid levels.”

There is a constant need for blood donations from all races, ethnicities and blood types. According to the Red Cross, donations can usually help up to three adults and can be used for treating ​​accident and burn victims, heart surgery, organ transplant and sickle cell patients and those battling cancer.

Schedule an appointment, find a blood drive or learn more at