As a child, Gwendolyn Brown had bigger concerns than getting the stylish new toy for Christmas or being the last one chosen for a game of "tag."
"I dealt with many questions," she says. "I knew I was 'different' from my siblings so I felt rejected. I still had to get up and go to school everyday. I had chores. And when I got sick, I went to the hospital.
"I learned at a very young age how to take my mind off the constant pain."
Brown, like roughly 70,000 other people in the United States, is living with sickle cell disease and had to teach herself from an early age how to handle the chronic illness.
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.
It wasn't easy for Brown to come to terms with what was going on within her body.
"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."
Brown says she eventually returned for care at University Hospital (UH) but remained hesitant towards taking medications for pain and maintenance of the disease.
Finally, with some guidance from Annette Lavender, a nurse practitioner at UH, Brown understood the need for the medications and for research possibilities.
Now, with this experience under her belt, Brown is helping UC doctors in internal medicine and pediatrics create a comprehensive treatment network in Cincinnati to help patients like her optimally manage sickle cell care on their own.
Last fall, researchers received a $1.28 million grant from the federal Health Resources and Services Administration (HRSA) to launch a program that will help with transitional care from childhood through the adult years.
The program is 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.
"We want to develop a chronic disease self-management training program to help patients deal with their disease and adapt to living life with it," says Thomas Webb, MD, assistant professor of medicine and pediatrics who is spearheading this initiative.
During a six-week course, patients will learn the importance of caring for their bodies through proper nutrition, exercise and pain management.
In addition, the sickle cell network will provide access to psychologists, social workers and job counselors to ensure each patient's emotional and vocational needs are addressed.
Brown, the facilitating health educator of the network, says people living with sickle cell disease are often "under-employed" because of their medical complications.
"We can offer patients 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 says her decision to get involved was "God-sent."
"While attending my own appointments, I would often see patients struggling with issues of the disease, whether it was physical or emotional pain they were experiencing," she says. "Many would ask me how I coped. I asked God to give me an avenue to share and give hope to those who felt they had to live the remainder of their lives in their current state.
"I volunteered with Annette until funding was available to allow me to get involved professionally."
Brown says she feels she has become successful because of her "self-learned" self-management.
"From a young age, I learned distraction techniques could keep me from focusing on the pain," she says.
"My parents made me eat healthy and get plenty of exercise. These are all self-management techniques that I teach."
Webb says that in addition to patient education, training will be offered to primary care doctors, who can help comanage the disease for patients.
"In this program, doctors-from the pediatrician to the adult primary care doctor to the hematologist-have direct access to each other and share information to ensure quality, tailored care for patients," he adds.
Brown, now 43 and a proud grandmother, says she hopes to help others learn to manage this chronic illness and become their own advocates.
"If I can teach them this, their quality of life will improve, and if they need an example, I'll say, 'Hey, just take a look at me,'" she says. "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."