Updated: September 24, 2020 07:48 PM
Created: September 24, 2020 04:49 PM
ROCHESTER, N.Y. (WHEC) — Imagine living with a disease in which without warning, you can suffer pain so excruciating only IV narcotics can relieve it. That's life with severe sickle cell anemia, an illness seen primarily in people of African descent.
Patients often need frequent blood transfusions, but right now that life-saving treatment is in short supply. And patients like the Rochester resident, Cynthia Baxter need you.
Baxter starts each day by reading a chapter of Proverbs, her Biblical guide for navigating a world of uncertainty.
Having a church family, that helps a lot because they know your situation and they can pray for you, call you, encourage you,” Baxter said.
Her church family and biological family provide a circle of support so important because Cynthia has sickle cell disease, a hereditary illness that causes a cauldron of complications that together lead to a lifetime of hospitalizations, medications and blood transfusions.
"Even today, like I'm talking to you now. And the next minute I can start feeling sick, and I can tell when it's coming on,” she said.
Your bone marrow creates red blood cells that are flexible and donut-shaped. But in people with sickle cell disease, the red blood cells become rigid and shaped like sickles. Those sickle-shaped cells can't flow through the body and get jammed up in blood vessels.
"It is extreme pain and it can be—I can't even describe it. You have to go to the hospital to get narcotics to help with the pain,” Baxter explained.
Often frequent blood transfusions are needed to survive, and donors within your own race are key.
"So most people know about the major blood type groups – A, B, O, and Rh. But fewer people know about the minor red cell antigens,” explained Dr. Suzie Noronha, a URMC hematologist who treats pediatric sickle cell patients.
Those antigens are molecules on the surface of red blood cells. You're more likely to find an antigen match in people of your own race. So because sickle cell disease occurs primarily in people of African descent, there is a critical need for Black blood donors.
Baxter is one of six siblings. One of her younger sisters died from sickle cell complications. But Baxter holds fast to faith.
"You just keep going,” she said resolutely. “You don't let it define you."
Instead, hers is a life defined by a family's love and lengthened with the help of life-sustaining transfusions. She has a message for donors.
"You're helping someone out there who may not live to see another day because they can't get blood, so it's very important,” she said.
September is Sickle Cell Awareness Month, and the Red Cross is pleading for African Americans to become blood donors.
Their sickle cell blood drive is this Saturday, Sept. 26 from 10 a.m. until 3 p.m. at the Edgerton Community Center located at 41 Backus St.
To make an appointment call 1-800-RED-CROSS or click here to sign up online. If you sign up online, you can simply enter the sponsor code DIVERSITY where it says “find a blood drive” and it will pull Saturday’s details right up.
You can also use the Red Cross donor app.
Copyright 2020 - WHEC-TV, LLC A Hubbard Broadcasting Company