Wednesday, March 24, 2010 -
Rocklin & Roseville Today http://www.rocklintoday.com/
(SACRAMENTO, Calif.) - UC Davis will welcome sickle cell disease experts, consumers and their families for a two-day symposium on March 26 and 27.
The symposium will focus both on the history of the disease — the discovery of which was made 100 years ago — and on progress in the treatment of and care for patients. Lectures, workshops and panel discussions are designed for both providers and consumers.
The meeting, to be held at the Education Building, 4610 X Street on the Sacramento campus of UC Davis, will be co-sponsored by Children’s Hospital and Research Center in Oakland, Sickle Cell Disease Foundation of California and UC Davis Medical Center.
The inherited disease affects an estimated 70,000 to 100,000 people in the United States, about 85 percent of whom are African Americans. Hispanics comprise an estimated 5-10 percent of those affected, and despite popular perception whites represent 5 percent of patients.
Considered an orphan disease because it is relatively rare and its cadre of researchers is small, sickle cell disease is now detected during newborn genetic screening, said Ted Wun, chief of hematology and oncology at UC Davis and a sickle cell disease expert.
The disease is a blood disorder characterized by red blood cells that take on a sickle shape, affecting the cells’ ability to circulate through the blood vessels. Sickle cell disease is marked by acute, painful episodes caused by the occlusion of small vessels, particularly in the long bones of the legs, hips and back, and also often in the hands and feet of children. Children with sickle cell are especially prone to infections and to stroke, and the disease may cause kidney failure in older patients, Wun said.
Wun called sickle cell disease “a tough nut to crack,” because of relatively few treatment options, a relative lack of federal funding for disease research and difficulty in recruiting individuals with sickle cell disease into clinical trials.
“In the last 10 years there have been more attempts at studies,” he said, citing development of newer drugs that are based on a better understanding of the disease and efforts to inhibit its long-term effects. UC Davis is one of the few centers in the United States with an active clinical research program and has enrolled numerous patients into studies over the last decade.
Wun will present an overview of sickle cell disease at the symposium.
Also presenting at the annual event is Helen Rice, practice manager and clinical manager of UC Davis Cancer Center. Rice will discuss a model of care developed at UC Davis to address common problems associated with care of sickle cell patients. She said sickle cell patients are typically from underserved populations and may come into the health-care system needing emergency care, infusions or pain management, but until recently that care was not coordinated. Rice brought caregivers from different departments together to develop standardized procedures, a model now being replicated in other hospitals throughout the country.
Other experts at the symposium will address needs of the sickle cell disease consumer as they get older, the role of nurses as advocates for patients, potential dangers for athletes who have the sickle cell trait and the development of better treatments for the disease.
UC Davis Children's Hospital is the Sacramento region's only comprehensive hospital for children. From primary-care offices to specialty and intensive-care clinics, pediatric experts provide compassionate care to more than 100,000 children each year and conduct research on causes and improved treatments for conditions such as autism, asthma, obesity, cancer and birth defects. For more information, visit www.ucdmc.ucdavis.edu/children.