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Sickle Cell patients work to educate others about the disease

Cory Lewis and Alexis Lott are both working to educate their peers and those in the medical community about Sickle Cell Disease.

ATLANTA — The doctors at the hospital in Alexis Lott's hometown of Columbus, Georgia never warned her mother she could have been born with Sickle Cell Disease, she said. 

"Doctor's knew my mother was at risk with her testing positive for the Sickle Trait, and they did not explain the risk factors to my mother. The potential of passing the disease to me. My father had Sickle Cell Trait also," she told 11Alive's Karys Belger.

Lott was diagnosed with Sickle Cell Disease six months after she was born. The condition causes the normally round red blood cells to take on a crescent or sickle shape, thus the name. Bartlett said her mother was given a grim outlook of what her life would be like. 

"We were told so many different things about what my life would be like. I would not grow to certain places. I would, you know, puberty would be delayed. I would have eating problems. I would be very malnourished, very skinny," she said.

Despite being hospitalized around twice a year throughout her childhood, Lott said she was pretty healthy. She did notice a shift in the way she was treated once she became an adult. 

"Once I turned 18-years-old, everything changed. The way healthcare systems treated me, what would happen when I walked into emergency rooms would be different," Bartlett explained.

Lott said she would often be met with skepticism when she would attempt to seek emergency care. Some doctors and nurses refused to believe she was sick. 

"When it came to me being admitted into hospitals going into the emergency room, there was always this stigma that if I wasn't coming in crying, hyperventilating, you know, majorly upset that there was this under underlying fault that you're coming into the emergency room, not in a full-blown crisis or not hyperventilating means that you are asking for drugs," she continued. 

In the last year, Lott was able to transition to Grady Memorial Hospital for her care. She's was admitted into a clinic at Grady and said her care has drastically improved. The one caveat is she has to travel more than an hour away from home in order to receive care. 

Because of her own experiences, Lott has decided to become an advocate. She said hearing the struggles of other Sickle Cell warriors like herself pushed her to strive for better education in the medical space.

Expanding access to resources and educating the public is at the heart of Cory Lewis' organization The Red Moon Project. Cory started the organization in 2019 after his own harrowing experience with a doctor while trying to receive care for Sickle Cell Disease. 

"Adult care is all about access to resources number one, and access to education. And I think that the more educated the health care system that you are in, the better quality of life you have," Lewis said.

The idea for the name came naturally. Cory thought about the similarities between the moon in Arizona and the cells in his own body. 

"I don't know if anybody has ever seen this or anybody has ever experienced seeing the Moon actually like a red, especially in Arizona. And that's literally just like a shout out to me because I'm looking at a red moon in the sky, and I just kept thinking like that's like a Sickle Cell," Lewis said.

Cory currently works with other health organizations to try and help Sickle patients get the care they need, and make sure it's as affordable as possible. He also gives lectures to high school and college students, so they have the knowledge to advocate for themselves when they go to a doctor. 

Cory is hoping The Red Moon Project will continue to help his community so people can get better overall care and have a better quality of life.