BUFFALO, N.Y. — Though often overlooked, sickle cell disease affects many people. In Western New York, a strong community has come together to support those living with the condition.
Sickle cell disease is a group of inherited blood disorders that causes abnormalities in red blood cells. According to the CDC, the disease affects about 100,000 people in the United States, with more than 90 percent being African Americans. An estimated 3 to 9 percent affected are Hispanic or Latino.
Juanita McClain was only a few months old when she had her first sickle cell crisis. She now works as the President of the Sickle Cell Warriors of Buffalo and as an educator. McClain continues to persevere after losing her gallbladder and navigates life with a dysfunctional spleen.
Despite the adversity, McClain continues to live her best life.
"I still get up every day and I stay encouraged and I stay just doing my best no matter what even days when I'm in pain I still have to keep going and still just the best who l am and that's an advocate a mother and a teacher," she said.
A mother of a Sickle Cell Warrior, Melaney Agahiu, said McClain’s guidance helped her with her son’s diagnosis.
“She is so resourceful, and the group is so resourceful that is helpful that with Drew as he's starting to transition to adulthood,” said Agahiu.
She adds that she is not alone with the Sickle Cell Warriors and the organization helped her find crucial resources.
“Sickle Cell Warriors has gotten us into contact with pharmaceutical companies, so we know what's on the horizon as far as different medicines and different treatment plans,” she said.
It’s a community of mothers, fathers, and parents of Sickle Cell Warriors who help their kids to live a ‘normal’ life.
Mother Sonya Williams said it has not been an easy journey with her daughter Mariah’s diagnosis, adding that Mariah has endured multiple life-or-death situations.
“The number of physicians that she has to see, providers, specialists- it's literally a full-time job with all the complications that she suffers,” said Sonya Williams.
Mariah adds that the monthly meetings with other sickle cell warriors make a difference.
“There are doctors to be in contact with other organizations that support and donate and it's really just a lovely community," she said.
Mariah adds that she is grateful for the Sickle Cell Warriors organization and the community it brings.
“Really what's important is having a big community of supporters family who understand what you're going through just mental and just help you walk through the top parts of life to make the darker days seem a little brighter.”