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Sickle Cell Support Group Seeks to Focus Attention on Disease

Sickle Cell, a painful and often deadly blood illness, is the most common genetic disease in the US, where more than 75,000 Americans suffer with it.
Sickle cell is in many nationalities, including African Americans, Arabs, Greeks, Italians, Latin Americans and people from India.
All races, but especially those at higher risk, should be screened at birth to determine if they are a carrier of the inherited Sickle Cell trait or if they have the disease, according to the National Institutes of Health.
The V.I. Sickle Cell Support Group’s St. Croix chapter recently urged Gov. John deJongh Jr. to make note that September is Sickle Cell Awareness Month and bring some attention to the issue, which he did earlier this week.
People of African descent are disproportionately likely to carry the trait. As that encompasses a large majority of the Virgin Islands population, increasing awareness of the disease, its causes, possible prevention and treatments, is that much more important in the territory, along with knowing more about what patients have to deal with, what their concerns are and where they can go for help
In the U.S. as a whole, one out of 10 African Americans has sickle cell trait and 1 out of 625 babies born to African Americans has the blood disorder. Having the gene usually has no ill effects, but if both parents have the trait, each child has a one in four chance of receiving two copies of the gene, which will produce sickle cell disease.
It causes painful and deadly circulatory problems. Normal red blood cells are round like doughnuts, and they move easily through small blood vessels to deliver oxygen. With sickle cell, red blood cells become hard, sticky and crescent shaped because of a molecular change in the hemoglobin, the molecule that carries oxygen. The sickle-shaped cells can catch and create blockages in blood vessels, cutting blood flow and damaging organs and tissues.
The damage causes multiple health problems such as jaundice, severely painful joints, slow growth, leg ulcers, and even stroke and death. The red blood cells only live a short time, straining the body’s ability to produce more and causing anemia.
The V.I. Sickle Cell Support Group’s St. Croix chapter meets once a month to share parents come ideas, information, strategies and experiences.
"It makes it easier for me, meeting with the group, because I know others are dealing with the same thing," said Barbara Francis, a member of the group whose son was diagnosed with the disease.
"In 1987, they began testing newborns for the trait," Francis recalled. "But that was long after my son, who was 14 when he was diagnosed after an acute episode."
There are three types of sickle cell, with somewhat different trajectories. How fast or slow or how severely the disease affects a person depends on the environment, the person, his or her lifestyle and the type of sickle cell, said Francis.
"You can have sudden acute crises or crises that come on gradually," she said.
Anything that affects circulation can trigger episodes. She and others in the group who met in La Reine Thursday said drinking lots of liquids every day is important to keep the blood from thickening. Sodas, especially those with caffeine or lots of artificial coloring, are bad.
"Sudden changes in temperature can trigger episodes," Francis said.
"We find the beach and swimming to be the most dangerous day-to-day activity," said Sylvia Felix, another member of the group, agreeing with Francis. Excessive heat, stress, exhaustion and other illnesses can trigger attacks too.
Jacqueline Canton, a registered nurse in the maternal child health program who sees a lot of sickle cell patients, said it’s important for patients to be diagnosed early, preferably before birth, and rigorously follow treatment recommendations.
Because of the interactions with other illnesses, infants and young children are given antibiotics and are urged to get a larger number of childhood vaccines, she said. The drug hydroxyurea is used to treat the disease, with some measurable benefit to patients, but as yet there is no cure. Patients should get blood drawn and tested every two months even when there are no symptoms, she said.
Treating the illness is expensive, and patients often lose time at work because of painful attacks. The V.I. Sickle Cell Support Group’s annual fundraising banquet is coming up, Sept. 20 on the St. Thomas campus of the University of the Virgin Islands. The money they raise will help pay to fly patients off-island for treatment in Puerto Rico and the mainland, as well as other sudden, emergency expenses families have trouble absorbing, Francis said.
Tickets to the banquet are $30 for adults and $15 for children. To find out more, call Francis at 773-1311 ext. 3080 or call Germaine Powell at 778-1709. For authoritative sickle cell information on the internet, visit www.SCInfo.org.

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