Sept. 22, 2003 – Thirty-nine-year-old Cynthia Swift has lived with pain most of her life. Since being diagnosed with sickle-cell disease at 10 months of age, the Virgin Islander has been in and out of hospitals continually.
"People need to be aware of this disease," she said. "People of my generation have a high incidence of sickle cell, because there wasn't any blood testing for it for a long time. You could get married without a blood test and pass on the trait, and not know it."
Swift was one of the few people with sickle-cell disease who showed up on Monday morning at Roy L. Schneider Hospital for a press conference announcing the donation by the St. Thomas-St. John Sickle Cell Disease Association of five pain-management devices purchased with community contributions.
More than 2.5 million Americans carry the trait for sickle-cell disease, and 70,000 are diagnosed with the disease. The African-American community is primarily at risk. One of every 400 African-American babies born in the United States has some form of sickle-cell disease, a red blood disorder that attacks each person's immune system differently. Many suffer anemia, episodes of pain, and increased susceptibility to infections. Often blood transfusions are needed to prevent childhood strokes and other complications.
The disease does not affect the brain, and many afflicted with it lead productive lives with proper care and medication despite their physical complications.
Often, the stigma of having the disease is a great burden while growing up, Swift said. And as an adult, she said, she has experienced job discrimination. "It's one of the worst things," she said, "because even though I have the skills and experience, I get passed over because I am honest about having sickle-cell disease."
More than 350 Virgin Islanders have the disease, according to the Health Department’s Patricia Penn, who founded the St. Thomas-St. John Sickle Cell Disease Association four years ago. Since the federal government mandated sickle-cell testing in 1987, about 200 babies have been diagnosed with the disease in the territory. Pregnant women as well as newborns are tested at both of the territory's hospitals.
"We have about 99 percent of our newborns who get screened now," Penn said.
"We hear all the time about AIDS, cancer and asthma, but sickle-cell disease is just as devastating and causes a lot of debilitating problems," Shirley White, president of the St. Thomas-St. John association, said. He son discovered he had the disease at the age of 13.
White said the association helps patents and parents who live with sickle-cell. It holds support meetings for these families, organizes fund-raisers and develops community awareness programs about the disease.
Sickle-cell disease is transmitted by genetic inheritance. Both parents must have the sickle-cell gene in order for a child to have sickle-cell disease. But if just one parent has the gene, the child may inherit the sickle-cell trait. Children who carry the trait will not acquire the disease but are at risk for passing the trait on to their children. There are many Internet sites with information about the disease; the March of Dimes Web site is one of them.
September is National Sickle Cell Disease Month. For this year's observance, the local association's slogan is "Know Your Trait Before You Date."
The group notifies parents of children who test positive for the sickle-cell trait, and it encourages Virgin Islanders born before 1987 to be tested on their own.
About six months ago, White met with Rodney Miller, chief executive officer at Roy L. Schneider Hospital, to talk about the need for what are known as Patient Controlled Analgesia Machines. These are devices which give patients more control over their own pain medication.
Miller was surprised to learn the hospital did not have any such machines.
"The donation of these machines will certainly help the patients at our hospital who truly deserve this type of technology," Miller said at Monday's press conference. "This signifies that when the community comes together with the hospital, we can do great things." He added that the hospital will be purchasing more of the machines in the future.
The pain-management devices, which cost $1,820 each, deliver a controlled dose of pain-killing medication when the patient needs it, avoiding the time, paperwork and staff resources it would ordinarily involve to deliver medication.
"It's one more step closer to excellence in patient care," Cherie Henry, hospital clinical care coordinator, said. She said the equipment manufacturer, Baxter Co., would be setting up procedures and training hospital staff personnel in setting up and managing the machines. Henry said she does not know how soon the machines will go into use.
The local sickle-cell association purchased one of the machines. Contributions for the other four came from Banco Popular, Delegate Donna M. Christensen, Financial Trust Company and The West Indian Co.
Also recognized were donors of less than $200: Cranston Dottin Biomedical Laboratory, Denielle David, Dr. E. Olutayo Deleona, Monya Dowdell, FirstBank, Vincent Fuller, Dr. Herbert Goldman, Dr. Horace Griffith, Dr. Alfred O. Heath, Minkoff & Associates Realtors, Roy's Construction, Andrew and Janet Rutnik, Dr. Edward Saunders, Select Insurance Services, Sólo Arte, Dr. G. Dwight Walker and Work-Able Inc.
White said she had been working on raising funds for the equipment since late last year.
Miller credited her for spearheading the effort. "When Ms. White puts her mind to something, she does not stop until it is accomplished," he said. "She has worked day in and day out to make this dream a reality."
For more information about the St. Thomas-St. John Sickle Cell Disease Association, call 776-0566. For information about sickle-cell, contact the Health Department's Maternal Child Health Clinic at 777-8804 on St. Thomas or 773-3079 in St. Croix.

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