For 28 years, September has been recognized as National Sickle Cell Awareness Month. This year, university students are walking to raise awareness about the disease.
The walk, which is scheduled to start at Citizens Field, 1400 NE Eighth Ave., and end at T.B. McPherson Park, 1717 SE 15th St., will be Saturday from 9 a.m. to 1 p.m.
Participants will be able to sit in on presentations about sickle cell disease after the two-mile walk.
The walk was coordinated by the Streetlight Program of Shands Children's Hospital, Mount Bethel House of God Church of Micanopy and the Gainesville chapter of the Sickle Cell Association of North Central Florida.
Registration will begin at 8 a.m. and costs $10. Walkers may register at Citizens Field the day of the event or in advance online at facebook.com/StopSCD.
Earnestine Gardner, outreach coordinator for the Sickle Cell Association of North Central Florida, who also serves Alachua and Putnam Counties, said people misunderstand how sickle cell affects a person's daily life.
She has been working with the association for the past six years.
"The pain is real, whether you know or not," Gardner said. "People should be more open to hear about sickle cell disease, even if you don't have it."
The pain is familiar to Angela Sheppard, a secretary of Gainesville's Sickle Cell Association of North Central Florida.
Sheppard, 42, was diagnosed with sickle cell when she was two years old and has learned to manage her symptoms over the years.
Sickle cell disease causes red blood cells to become jagged and sickle-shaped, so they don't carry enough oxygen through the blood stream, according to Mayo Clinic.
"So imagine all of these razors in your body clogging up and getting stuck in one area," Sheppard said of the cells. "And the edges of these razors start cutting and jabbing at your bone. You're left feeling like you're getting stabbed over and over again. This is what sickling is. This is the pain crisis that we go through."
Sheppard's husband, Murrvin Sheppard, a pastor and president of Gainesville's Sickle Cell Association, said this year's walk is a chance to make a lasting change in sickle cell education and awareness.
"Education and awareness: this is why the walk came about," Murrvin said.
The disease is a genetic condition that is present at birth. According to the Sickle Cell Association of Florida, the disease affects an estimated 90,000 to 100,000 Americans. About 2 million Americans, and one in 12 African Americans, carry the sickle cell trait.
On a global scale, millions of people, especially in South America, the Middle East and Mediterranean, either have the trait and or suffer from sickle cell, Gardner said.
Shedeline Charles, UF sociology student and co-director of Stop the Sickle Cell campaign, said from a patient's perspective, it is heartwarming to see the organizations coming together to help the cause.
"We need their support," she said.
Charles said that the students who serve on Streetlight's Stop the Sickle Cycle campaign are educated in the disease and help others become educated as well. She said the lack of resources and advocacy contribute to the continuous cycle of sickle cell disease.
"Once you become aware, you can become an advocate," Charles said. "That's why this walk has so much potential. We're teaching others too."
Rebecca Brown, Streetlight director and Adolescent Palliative Care and Programming director, said she considers the walk the beginning for the progression of sickle cell disease awareness and education.
"This [walk] can be big," Brown said. "For years, people wouldn't even speak about breast cancer; it was too private of a condition. Now look, you see a pink ribbon and think ‘Race for the Cure.' The walk may seem like a small and local start, but all causes started somewhere."
Proceeds from the walk's registration fee will be donated to the Shands Streetlight Program and the Sickle Cell Disease Association of North Central Florida and Gainesville. The proceeds will help families of sickle cell patients with medical costs, childcare services and transportation expenses.
For more information or to register for the walk, call 352-591-4703 or visit facebook.com/StopSCD.
Donations can be sent to SCDA of NCF, P. O. Box 141205, Gainesville, Fla., 32614.
