"We hope to diversify the face of sickle cell so it's not seen as only a face of African descent," said Theopia Jackson, of the Northern California Sickle Cell Center of Children's Hospital & Research Center Oakland. "Today there are many California families living with sickle cell disease of Asian American and Latino heritage," Jackson said.
"Diversifying the Face of Sickle Cell Disease" is one of many topics that sickle cell caregivers -- including physicians, nurses and therapists -- will explore during the 6th Annual Sickle Cell Disease Symposium, a statewide conference for health care providers, consumers and the broader community, to be held on Friday, March 27, and Saturday, March 28, at UC Davis' Sacramento campus.
The symposium will be held in the Education Building, at 4610 X St., Sacramento. The event is co-sponsored by UC Davis Medical Center, Children's Hospital & Research Center Oakland, the Sickle Cell Disease Foundation of California and the California Department of Public Health Genetic Disease Screening Program.
The symposium program offers nearly 20 separate sessions, including discussions of research into new therapies for sickle cell disease, pain management for individuals with sickle cell disease and support for individuals with sickle cell in school and the workplace.
Sickle cell disease is a lifelong blood disorder characterized by red blood cells that assume a sickle shape rather than the disk shape of normal red blood cells. The disorder affects the cells' ability to deliver oxygen to the body, resulting in a constellation of symptoms affecting a variety of organ systems and episodes of severe pain for sufferers. Life expectancy for sickle cell sufferers is 40 to 50 years.
In the United States, the prevalence of sickle cell disease still is greatest among African Americans. About one in 14 Americans of African descent carry the sickle cell trait and one in every 300 suffer from the disease.
Jackson said that while the numbers of sufferers of diverse backgrounds is difficult to gauge, their presence is increasingly encouraging health-care providers to think more about how to serve patients from different cultures.
Aurora Dominguez of Pittsburg is the mother of two such patients -- Alondra, 10 and Irene, 4. Dominguez will participate in the panel discussion on the diverse faces of sickle cell disease on Saturday.
"It's very hard, because when you tell them your children have sickle cell disease, they don't believe you," said Dominquez, whose family is of Mexican descent. "When I go to the emergency room and tell them my child has sickle cell they don't believe you. And there's very little information in Spanish for us."
"It's hard for my family to understand. When you tell them that your child has sickle cell disease they think your child is anemic and just need vitamins or iron," Dominguez said.
During a session scheduled for Friday, March 27, Ted Zwerdling, of the Division of Pediatric Hematology and Oncology at UC Davis Children's Hospital, will discuss ethical conduct in research settings and the history of abuse of African Americans in U.S. medical research.
Jacqueline Ramsay, also the mother of two children with sickle cell disease, Aaron, 11 and Alana, 9, worked with UC Davis pediatric hematology and oncology case manager Martha Donaldson to establish a sickle cell support group for families coping with their children's diagnoses.
"You feel really isolated and alone when you child has sickle cell," Ramsay said. "People don't understand why your children need to miss so much school, because of all of the doctors visits and hospitalizations. This is huge and it's hard to go through alone," she said.
The price of conference registration is $120 for health-care professionals and $70 for students and consumers. Registration is available at www.scdfc.org. For additional conference information, please contact the Sickle Cell Disease Foundation of California, at (310) 693-0247.
The Sickle Cell Disease Foundation of California is the first nonprofit social services sickle cell disease organization in the United States. Founded in 1957, the foundation provides direct programs to people with sickle cell disease and their families. Programs and services include education and counseling, summer camps, community and family education and other support programs.
The California Department of Public Health, Genetic Disease Screening Program operates the largest newborn screening program in the United States, testing all California newborns for a variety of congenital conditions including sickle cell anemia. Through screening, over 8,500 babies with a clinically significant disease have been identified and referred for treatment.
The Talking Drums Project is an educational, outreach and patient services program operated jointly by Children's Hospital & Research Center Oakland and the Northern California Comprehensive Sickle Cell Center (NCCSCC). The NCCSCC is the largest sickle cell program in the Western United States and is internationally renowned as being at the forefront of sickle cell treatment and research.
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.