Sacramento hosts forum on sickle cell disease
When Michelle Stiger of Sacramento learned she was pregnant and her baby had sickle cell disease, she was scared.
"I had hardly heard of it before," she said.
Stiger sought care at UC Davis Medical Center, one of the few centers in the United States with an active sickle cell clinical research program. And 12 years later, her son, who gets monthly blood transfusions, follows a normal regimen of Xbox, swimming and other sports.
Stiger attended the seventh annual sickle cell symposium held Friday and Saturday at UC Davis Medical School.
While sickle cell disease is one of the most common genetic disorders, affecting between 70,000 and 100,000 Americans, there is little public awareness. Eighty-five percent of patients are black, and private funding is scant compared with other rare diseases.
The weekend gathering was an unusual convergence of patients and health care providers discussing the disease in seminars like "Research Updates: Breaking News" or "Advocating for Yourself and Your Child in the Emergency Room."
Sickle cell is characterized by red blood cells taking on a crescent, rather than plate, shape. Patients endure painful episodes that occur when the sickled red blood cells clog small blood vessels, leading to poorly oxygenated organs.
"It's like having an ice pick rammed into your bones over and over again, and it lasts from a few hours to a few weeks," said Marsha Treadwell, director of patient services at the sickle cell center at Children's Hospital Oakland.
UC Davis Medical Center cares for about 300 patients, said Helen Rice, a nurse manager at the UC Davis Cancer Center.
On Saturday, many patients expressed anger toward emergency room treatment during a pain episode. "People think I am a drug addict," said the Rev. Xavier Garrison of Oakland.
In 1973, the average life expectancy for a patient was 14 years. Now, some patients can expect to live into their 40s. Others have been cured with bone marrow transplants.
Advances in stem cell research look promising, said Dr. Cage Johnson, director of the Comprehensive Sickle Cell Center at the University of Southern California.