September is National Sickle Cell Awareness Month and Black political and community leaders are being pressed into educating their constituents about the disease that affects one out of every 400 African-Americans. The New York Blood Center, the leading supplier of blood to the New York-New Jersey greater metropolitan area, is urging these leaders to encourage more African-Americans to donate blood that can be used to treat sickle cell patients. The center also is working with New York City Health and Hospitals Corp. to hold blood drives throughout the month and beyond at hospitals with sickle cell clinics.
“The problem we have here is our donor demographics don’t match our patient population. People with sickle cell disease, who are 98 percent of African heritage, often require multiple transfusions for treatment. They often develop immunization to various types of blood and require fairly rare blood only found in the same racial group,” says Wendy Geringer, who heads the center’s sickle cell outreach program. “It’s paradoxical that our donor population is about 75 percent Caucasian when our service area is far more diverse than that. We want to universally expand our donor population across all ethnic groups, but specifically with respect to sickle cell and the high prevalence of the disease in the city because of the number of African-Americans. This is an important issue [for the Black community],” she says.
Sickle cell is an inherited, chronic blood disease in which the red blood cells become crescent, or sickle, shaped and are unable to deliver adequate amounts of oxygen to other cells. The disease results in anemia; episodes of pain that may last hours to days, affecting the bones of the back, the long bones and the chest; and increased susceptibility to infections. Chronic anemia may become life threatening when hemolytic crises (the breakdown of red blood cells) or aplastic crises (the bone marrow fails to produce blood cells) occur. Repeated crises can lead to damage of the kidneys, lungs, bone, liver and central nervous system.
Deborah Oster Pannell, secretary-treasurer of Sickle Cell Advocates for Research and Empowerment Inc., a nonprofit organization in the Bronx, N.Y., that seeks to improve the quality of life of persons with sickle cell disease through education and advocacy, says alternative medicine has worked its way into the treatment of the disease.
“Many people swear by the positive effects of certain herbal medicines, vitamins, changes in diet, the regular practice of yoga, meditation and self hypnosis, as well as other forms of treatment, such as acupuncture, massage and chiropractic,” she says in an article on alternative healing and sickle cell disease, published on the group’s Web site at www.defiers.com .
Both Pannell and her husband, Ivor, who is president of S.C.A.R.E., are sickle cell patients. “We have used acupuncture and Chinese herbs to facilitate the management of minor aches and pains, increase overall energy and stamina, regulate and harmonize [Ivor’s] sleep patterns and digestive functions, and significantly reduce stress, which if left unchecked can often precipitate a crisis. In this way we have been able to incorporate Chinese medicine into Ivor’s [and my] total health care regime in order to maintain better balance and harmony in our day-to-day well being,” she says.
She cautions that not every sickle cell patient should “go out tomorrow and begin receiving acupuncture treatments.”However, she notes, “I can recommend from personal experience the benefits I have observed and encourage people with sufficient resources to explore the possible benefits for themselves.”
Sickle cell disease will be one of the topics discussed at the Multicultural Summit on Complementary Alternative Medicine (MSCAM), scheduled September 19-20, at Columbia University. The Network Journal is presenting the summit in partnership with Columbia University’s Rosenthal Center for Complementary & Alternative Medicine, the National Association of Health Services Executives and the Association of Hispanic Healthcare Executives.