More than 200 men, women, young adults and children came out to North Charleston's Riverfront Park for a day of fun activities and camaraderie to promote awareness in the first Sickle Cell Walk and Fun Run event held on Sept. 10. The event recognizes September as National Sickle Cell Disease Awareness Month.

The walk and run event was sponsored by the Concerned Citizens of Peninsula/Lowcountry as well as parents of children diagnosed with sickle cell disease. Proceeds from the event were donated to the MUSC Sickle Cell Clinic and related research. Shamekei Gray, who is the mother of two children with sickle cell disease, was this year's event organizer.

MUSC Pediatric Sickle Cell Clinic social worker Joyce Rivers Miller, left, stuffs some literature and information into goodie bags distributed at the Sept. 10 inaugural Sickle Cell Foundation Walk/Fun Run.

"I'm passionate about promoting awareness for sickle cell disease. When I walked in the Arthritis Walk in 2010, the experience inspired me to coordinate a walk for sickle cell disease. There are walks for all kinds of illnesses, but not sickle cell. It's a silent disease, and I feel more people need to know more about it," said Gray.

Sherron M. Jackson, M.D., associate professor of Pediatric Hematology/Oncology, MUSC Children's Hospital, serves as medical director of MUSC's Pediatric Sickle Cell Clinic. The clinic was founded in 1987 by Jackson to provide medical care for children diagnosed with sickle cell disease. Jackson has treated and cared for more than 500 patients and their families within the 25 years since the clinic opened. A compassionate caregiver, Jackson has followed her patients from infancy to adulthood as they learned to manage a lifetime of symptoms related to this disease including chronic pain, fatigue, risk for stroke, and sometimes death.

A simple mantra and belief drives Jackson and her clinical team to continue with their work: "The more children we can help through the clinic; the better the chance these children can lead happy, healthy lives."

Sickle cell disease is among a group of inherited red blood cell disorders where the body's red blood cells become hard, sticky and have a c-shaped appearance. Because sickle cells die early, they are responsible for a constant shortage of red blood cells and are the cause of other serious problems. Currently, the only known cure for sickle cell disease is a bone marrow or stem cell transplant.

In 1987, Jackson was instrumental in pushing a statewide mandate to conduct sickle cell screening tests on all newborns in South Carolina. It's estimated that about 30 newborns are diagnosed each year with the disease. The test identifies the newborn's hemoglobin type. The baby's blood from the screening test is shipped to the Department of Health and Environmental Control (DHEC) and the results shared with physicians and families within a few weeks to determine if the child has the trait or disease.

MUSC's Sickle Cell Clinic, located in Rutledge Tower, continues to serve new and existing patients throughout the Palmetto state. In 1994, the clinic expanded to treat patients monthly at the Waccamaw-Georgetown area clinic only to close in 2009 because of DHEC budget cuts. To help improve services for adults living with sickle cell disease, Jackson also supports the recruitment of a new adult hematology specialist who can help in the treatment of adult patients diagnosed with this life-threatening disease.

According to Jackson, adults with sickle cell disease struggle to receive adequate care because their symptoms can become more complex. With more services, awareness and training of primary care providers, adults can live more comfortably and manage symptoms associated with their disease.

Gray's simple message as a mother of children living with sickle cell disease and a compassionate advocate may say it best. "I look forward to the day when my children can someday be cured from sickle cell disease. If not, I hope they'll grow up to be fighters and advocates who can speak for themselves about their experiences when they become adults. I want them to say that they lived through this disease," she said.

For information about the MUSC Pediatric Sickle Cell Clinic, call 876-0444.