TAMPA, Fla. — September is Sickle Cell Awareness Month and both patients and doctors are hoping the calls for social justice in our country right now will help bring even more awareness about a disease that mostly affects Black Americans.

What You Need To Know

  • Sickle Cell Disease affects mostly Black Americans

  • Disease causes severe pain in patients

  • Stems from a malaria epidemic in Africa

  • More research and treatment needed

So what is sickle cell?  John Hopkins All Children’s hospital’s Sickle Cell Program Director, Dr. Leila Jerome Clay explained.

"The cell is actually shaped like a half moon or crescent moon and it’s what we call the sickle cell. And when they’re under stress or they don’t have enough oxygen, those cells can actually sickle and become more of that sickle shape,” Dr. Jerome Clay said. “They go through the vessel and kind of get stuck and cause a traffic jam in the vessel. And that’s really what causes the pain that we see.”

Annie Johnson has battled the disease all of her life and she explained just how excruciating that pain caused by the disease can be. 

“Well I don’t know if you can see but I have retinopathy from the sickle cell. Never knew it. 40 years I never knew my sight could be taken away with this disease. I know my bones are thinning. I’ve had hip replacements, shoulder replacements,” Johnson said.

Dr. Jerome Clay explained the origin of the painful genetic disease that impacts more Black people around the world, more than any other race. 

“A while ago there was a big malaria epidemic back in Africa and that gene basically came from the continent of Africa and people that survived Malaria actually were the ones with sickle cell or have the trait,” she said.

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There are also several types of sickle cell disease. 

According to the CDC, both parents have to have the sickle cell trait and then there’s a one in four chance of their child being born with sickle cell disease.

That trait is in Cecelia Mitchell’s bloodline and it’s part of the reason she started the Hands of Hope Sickle cell awareness foundation in Tampa. Her sister died from complications of the disease and her 26-year-old grandson is battling it now, something she says is no easy feat.

“It’s a hard process. Because most people think because it’s a predominantly African American disease, that most of the patients are drug seekers,” Mitchell said. "They did not ask for this disease. They were born with it.”

Getting treated for the painful disease can sometimes highlight some of the racial issues for Black people seeking medical care.

“When they come in it’s like well why are you here? What’s going on? Is it really pain? Is it really this, so one of the things we have to be is to continue to be an advocate for these patients,” Dr. Jerome Clay said. “They should get treatment just like everyone else. It shouldn’t matter what they look like. So that is something we still battle, regardless of the skin color. It still continues to be an issue for our patients.”

She said she’s hoping this sickle cell awareness month will lead to more people learning about the disease and better treatment in the future. 

“Now finally, maybe the world can see, look why do we still have disparities in this field? There’s other genetic disorders out there that are doing fine,” Dr. Jerome Clay said. “They have good treatment, they have good research, so why aren’t we doing more for the population that’s being targeted?”

She said the hospital she works for offers annual training but for those who aren’t aware of the disease or how to treat patients with it, she offered some advice. 

“What I would say to my colleagues out there is when you see a patient, don’t worry about what they look like, worry about what they present with. Work on their vitals, do an exam, talk to them, get to know them, understand where they come from. We all have different cultures, different backgrounds, different ways we adapt to things but we’re still humans and need to be treated as humans,” she said.