TEXAS, USA — The month of September is Sickle Cell Awareness month and the goal is to raise awareness of the disease to the public.
The Centers for Disease Control and Prevention report Sickle Cell Disease affects millions of people throughout the world and is particularly common among those whose ancestors came from sub-Saharan Africa; Spanish-speaking regions in the Western Hemisphere (South America, the Caribbean, and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy.
Sickle Cell is a disease that affects the body's red blood cells. While sickled red blood cells travel through small blood vessels, they get stuck and clog the blood flow. Because, people with Sickle Cell deal with severe pain on a daily basis.
Tiara Byrd was born with Sickle Cell and has had to adjust to the disease throughout her life. Byrd also mentioned preparation and staying aware of her body has helped her throughout her life while living with this disease.
She appreciates the month of September because many people who aren't aware of what Sickle Cell is have the chance to hear the stories of survivors and give back to the cause.
"Any opportunity that I have to educate the public on what I live with on a daily basis, what one in 100 African Americans deal with on a daily basis. just taking that opportunity to let them know, hey we're here, hear our voice. Allocate funds towards our research like any other illness. So it just really just means a lot to me," Byrd said.
Paul Gakpo was diagnosed at 9 months old and lost his twin brother to the disease in 2004. Now, he wants any one who has the disease or is diagnosed to understand their bodies and know the signs to look out for.
"Know when to push back against doctors when you feel like they're not telling you something that seems correct. You're just gonna have to be your number one advocate and learn about this disease because there's not much research out there so far. There's not much good data that we can rely on. But find yourself a community and don't be afraid to ask questions," Gakpo explained.
To further treat Sickle Cell warriors, the U.S. Congress proposed the Sickle Cell Care Expansion Act in June to improve the quality of life for people suffering from sickle cell disease. The hope is the bill will increase the number of qualified physicians who specialize in Sickle cell disease.