BUFFALO, N.Y. (WKBW) — For Drew Agahiu, living with sickle cell disease is something he has learned to navigate every day.
Diagnosed at birth, Drew experienced his first sickle cell crisis at four years old. Now, at 18 years old, managing his condition means always thinking ahead.
"Just adapted to it early, changed my lifestyle around," Drew said. "Bringing more water with me, or wearing extra clothes when it's hot, or even on the side, I'll bring a sweatshirt with me, like the air conditioning inside that can cause pain too."
Sickle cell disease is a group of inherited blood disorders that causes red blood cells to become hard, sticky and crescent-shaped. The abnormal cells can block blood flow, leading to severe pain, chronic anemia and organ damage.
According to the Centers for Disease Control and Prevention, sickle cell disease affects about 100,000 people in the United States. More than 90% are Black or African American, and people living with the disease have an average life expectancy more than 20 years shorter than the general population.
For Drew's mother, Melaney Agahiu, advocacy and support have been key to helping her family navigate the disease.
"They do so much for the community, and educated us about different pharmaceutical initiatives, and again advocating for us in the hospitals and the medical spaces where we don't get the attention that we need, but it's a great organization to be part of," Melaney said, executive director of Sickle Soul Warriors Buffalo.
WATCH: Buffalo organization raising sickle cell awareness ahead of World Sickle Cell Day blood drive
That support is what leaders at Sickle Cell Warriors of Buffalo say they are trying to expand.
The organization, founded in 2022, works to support sickle cell warriors through education, advocacy and resources. Vice president of the organization and a sickle cell warrior himself, Jason Robert Moore, says awareness is the first step toward change.
"Awareness leads to advocacy, which leads to action," Moore said. "You have to take those steps, not only awareness out in the community, but awareness of yourself."
The organization is also emphasizing the importance of blood donation, especially for patients like Drew who depend on regular transfusions.
To mark World Sickle Cell Day on June 19, Sickle Cell Warriors of Buffalo is partnering with the American Red Cross to host a blood drive Friday, at the Tri-Main Center from 9 a.m. to 1 p.m.
The organization will host a Community Day event on Saturday, June 20, at the Life Center on Edison Avenue, featuring guest speakers, vendors, activities and resources for families affected by sickle cell disease 11 a.m. to 2 p.m.
You can find additional information on the Sickle Cell Warriors of Buffalo here.
