Golf tournament aimed at raising awareness, funds for Albany area sickle cell disease patients

ALBANY — In 2013, Monica Rockwell was preparing to run another marathon when she collapsed and was hospitalized for two months.

The 38-year-old had been treated for some symptoms prior to that, but the diagnosis after her extensive hospital stay offered a staggering prognosis: sickle cell beta thalassaemia and congestive heart failure.

Finding that most resources and information related to sickle cell anemia, which primarily affects black people, were geared toward people younger than age 21, the Albany woman began researching and eventually became an advocate as well as a long-term survivor.

On Friday, the SWGA Sickle Cell Awareness group she founded will hold what it hopes will be the first annual golf tournament to raise funds and raise awareness of the genetic disorder that affects the shape of red blood cells that carry oxygen in the body.

The four-person scramble tournament is $65 per player or $260 per team and starts at 9 a.m. at the city of Albany’s Flint River Golf Course. The cost includes green fees, cart, lunch, beverages and a golfer’s swag bag. Individuals can register during the week or beginning at 8 a.m. on Friday.

There are two main types of sickle cell disease, both of which can cause occasional flare-ups of pain crises.

“It’s hard for blood to flow through the body (of a person with sickle cell), which causes pain crises,” Rockwell said. “It can be the heart, it can be the lungs, it can be anywhere in the body. Most sickle cell patients don’t die from the disease itself, they die from other conditions — heart disease, diabetes. They also experience chronic pain, chronic fatigue.”

Rockwell has an office at the Arthur K. Williams Micro Business Center in downtown Albany but makes appointments by phone at (229) 869-6671 or at [email protected]. She also attends health fairs and other events to get the word out.

Part of her work is educating people on how to access treatment and, just as importantly, how to pay for it through applying for indigent care or programs such as those provided by Albany Area Primary Health Care, which provides care on a sliding scale based on income.

At the last count available, Rockwell said, there were 254 sickle cell patients in Dougherty County. The disease was an underlying condition for COVID-19, and several patients succumbed to the coronavirus, some of whom had conditions like heart disease and diabetes. A number of patients, including Rockwell, used telehealth resources during the worst of the pandemic to avoid the risk of infection by going in person to health facilities.

Patients need a strong team, from primary care physician to a specialist to family and friends who can advocate on their behalf, when they are not able to do so themselves, Rockwell said.

“A lot of people don’t get the care they need because they don’t know the resources that are available,” she said. “They (team) have to understand what you need. When you’re in a pain crisis, you’re not always able to communicate what you need.”

These days Rockwell is occasionally entering marathons to participate in the walking events, and she also golfs.

“The goal of the tournament is to raise more awareness about sickle cell and to provide resources,” she said.

Sickle cell is a genetic disease that affects 8,000 to 10,000 Georgians, Dr. Derek Heard, the medical director for primary care with the Phoebe Physicians Group in Albany, said.

“It occurs in one of 293 African Americans” and also can affect individuals of Mediterranean or East Indian descent, said Heard, who has the milder form of sickle cell disease.

The more prevalent type, Hb-SS, is acquired by those who have two parents with the gene that causes sickle cell. It can cause strokes, heart attacks, organ damage and severe pain crises and require daily medication.

Today there are better treatments available than when he was a kid, Heard said, and there are some promising developments being researched.

The physician helps manage his condition by staying hydrated and trying to get sufficient rest.

“There aren’t as many resources for adults as there are for kids,” he said. “I would say sickle cell is woefully behind in terms of research (but) there is more awareness of the disease now, people are getting access to better treatment.

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