Sickle Cell Disease is the most common blood disorder in the U.S. according to the CDC, and it can be debilitating.
A normal red blood cell is circular shaped, but Sickle Cell Disease causes red blood cells to break down to a C-shape, causing blood flow to be blocked in one's body. This often leads to pain and infections.
September marks Sickle Cell Awareness Month and many people living with Sickle Cell have severe pain and infections, leaving many to face physical challenges in their lives.
Many living with Sickle Cell tell me it’s an uphill battle.
"I just keep pushing through. I take one day at a time. My motto is I have Sickle Cell. It doesn’t have me, so I have control of it. I try to rest," Travis Robinson, who lives with Sickle Cell, said.
Travis Robinson was diagnosed when he was born. According to the CDC, the disease is inherited and is more common in African Americans compared to any other ethnicity.
"With Sickle Cell, the main part of it is the excruciating pain you have. You can’t predict it. It feels like knives are stabbing you wherever you’re hurting at. Mostly it’s my chest or knee," Robinson said.
Travis says he has major Sickle Cell attacks about four times a year, leading him to go to the emergency room.
He started the Robinson Sickle Cell Foundation to help others living with the disease. He says he enjoys helping others as a nurse.
"Unfortunately, Sickle Cell is a very painful disease that can rob individuals the ability to do well in school, ability to hold jobs and have families," Dr. Edward Ivy said.
Dr. Ivy also lives with Sickle Cell, and says there have been significant medical advancements.
"Adakevo is a fairly new therapy for Sickle Cell Disease that decreases pain. On the horizon, there are new drugs that are still in the pipeline that have not been approved by the FDA but on the verge of getting approval," Ivy said.
A common medication for Sickle Cell is hydroxyurea, which reduces pain and helps reduce the need for blood transfusions, and the FDA is currently reviewing gene therapy as a treatment for patients.
High school senior Ayana Johnson says she was out of school in the hospital due to the disease.
"Sometimes I describe it as glass breaking in my body. I had a crisis every month throughout the year last year during my sophomore year of high school. I had some teachers who were not very understanding and they didn’t want to accommodate my needs and what I needed for my Sickle Cell Disease," Johnson said.
Ayana was crowned Miss Virginia Teen in 2022. She advocated for the disease with lawmakers and politicians, including President Joe Biden.
"My message to others who have Sickle Cell is to keep going and keep fighting," Johnson said.
Some tips the CDC recommends if you're living with Sickle Cell: drink at least 8 glasses of water and exercise weekly.
Most importantly, don't stay in the sun for too long.
