Sickle Cell Patient Branches Out to Create Support Group
Published May 2009
Gwen Brown deals with sickle cell disease every day—and not just by counseling patients.
Brown, 44, lives with the illness herself.
Sickle cell disease is an inherited disorder in which red blood cells are abnormally shaped. This abnormality can result in episodes of severe pain, serious infections, chronic anemia and organ damage.
Years ago, Brown struggled with disease management and had a hard time coming to terms with what life with sickle cell meant, but eventually she saw the light at the end of the tunnel and decided to be proactive.
“As an adult, I denied having the disease for about 10 years,” she says, noting that although she felt pain, she attributed it to different causes. “I overused over-the-counter medicine to try to control the pain. I was very hesitant about taking prescription medications for pain and maintenance of the disease.
“I’ve had some serious complications in my adult life, but I choose to have the mindset that I will defeat this disease and will not let it defeat me.”
With hopes of inspiring others, she became involved in a joint sickle cell management program at UC, led by Thomas Webb, MD, associate professor of medicine, in 2007.
The program—a partnership between the sickle cell centers at the College of Medicine, University Hospital and Cincinnati Children’s Hospital Medical Center, the local chapter of the Sickle Cell Disease Association of America, West End Health Center and Winton Hills Medical and Health Center—is in place to help patients as they transition their care from childhood through the adult years and to educate them about their illness.
In January 2008, Brown, who is a program manager in the internal medicine department at UC, branched out further to create a community-based organization to expand education and health care opportunities for patients with sickle cell disease.
The program—Sickle Cell Affected Families of Greater Cincinnati, Inc.—began as another way to meet the needs of patients living with this chronic illness.
Brown and associates received a $12,000 grant from the Health Resources and Services Adminis-tration as part of the Sickle Cell Disease Treatment Demonstration Project. This money helped jump start the community program, located at 1225 E. McMillan St.
They recently received an additional gift from the Sigma Omega chapter of the Alpha Kappa Alpha sorority at UC that will be used to establish a scholarship fund for adolescents or adults with sickle cell disease.
“This program offers self-management classes, support groups, housing and assistance with other social necessities,” says Brown, who serves as president and chief executive officer of the program.
An extension of the UC-based curriculum, patients learn the importance of caring for their bodies through proper nutrition, exercise and pain management.
The program also provides access to psychologists, social workers and job counselors to ensure each patient’s emotional and vocational needs are addressed.
Brown says people living with sickle cell disease are often “under-employed” because of their medical complications.
“We can help patients connect with additional training and employment options,” she says.
Patients will also receive genetic counseling and learn how sickle cell anemia is passed from generation to generation.
Brown has presented these self-management programs at several conferences and will continue to expand her curriculum to inspire and encourage sickle cell patients in the Cincinnati area to reach for the stars.
“We want our patients to see that it isn’t all gloom and doom,” she says. “This program helps them to see that there is more to life. With proper management of the disease, they can go to college, they can go to work, they can be parents—they can be successful.
“They are not a victim to sickle cell.”