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Later this spring, the Sickle Cell Disease Association of Southern Connecticut will open the first comprehensive sickle cell community center in the Northeast. The center — a project that has been in the works for several years — will offer educational programs, social services and health care resources for the sickle cell community in Connecticut.
“Our work is around trying to be supportive of research on one hand, but also the challenges of the sickle cell community on a daily basis,” said James Rawlings, chairman of the center. “We want to be a be a model. Everything we do we want to be a model and publish, so that we can inform the region and give some leadership.”
Sickle cell disease includes a collection of genetic disorders that affect the structure of red blood cells, which carry oxygen throughout the body. For those who have the sickle cell gene, also known as sickle cell trait carriers, red blood cells become irregularly crescent-shaped. Children who inherit two copies of the sickle cell gene from their parents will have sickle cell disease — characterized by a lack of healthy red blood cells. Sickle cell disease can cause lowered resistance to infections, anemia, organ damage, high risk of stroke and other health problems.
The disease predominantly affects communities of color. According to the National Institutes of Health, one in 13 African American babies is born with the sickle cell trait, while one in every 365 African American babies is born with sickle cell disease. The disease is overrepresented among Latino and Middle Eastern communities as well. Rawlings said that this could contribute to the “stigma of sickle cell disease” and the lack of awareness and research funding for the disorder.
“What you have never seen is a sickle cell presence,” said Rawlings. “You’ve seen cancer, you’ve seen this and that and that. But not sickle cell. … There has been nothing [like the center] that is comprehensive relative to the kinds of challenges of [the] sickle cell community.”
According to Rawlings, community members often do not understand the genetic nature of sickle cell disease and may unknowingly carry the sickle cell trait. One of the goals of the coming sickle cell center is to combat the “lack of awareness of the trait” through its educational programming.
Another goal of the educational programs at the center is to mediate the achievement gap between children with sickle cell disease and those without the disorder. Because the average sickle cell disease patient seeks acute care approximately five to six times every year, children with the disease will inevitably miss time in school, said Rawlings. Rawlings also noted that while 4.5 percent of youth in the United States repeat a grade, the rate of repeating a grade is 40 percent among those in the sickle cell community.
“We’re really trying to do something around education. We spend a great deal of time listening to the sickle cell community,” said Rawlings. “As they open up and talk about their challenges, one of them is of course the academic side. You don’t think about it. You simply look at the fact that [those with sickle cell disease] are hospitalized a lot, but what is the impact of that?”
When sickle cell disease patients are hospitalized, their employment may be interrupted, a problem which could present a financial burden to family members. Rawlings said that social services at the center will be devoted to “making sure that families of those with sickle cell disease are well-supported.”
Planning for the center started a decade ago, and the Sickle Cell Disease Association began working on the physical space three years ago. The building for the center, located on Chapel Street, was donated by Yale New Haven Hospital: The association leases the space at almost no cost. Renovating the 125-year-old house, which lacked heating and had structural issues, has been a challenging project. But the association has benefited from support from several community partners, including Yale New Haven Hospital, the Community Foundation of Greater New Haven and student volunteers from Yale and Southern Connecticut State University. The first open house of the center is set to take place in May or June this year.
“We have been supporting this for a long time,” said William Ginsberg, CEO of the Community Foundation for Greater New Haven. “I think that this is an inspiring idea — it’s much-needed in our community. Sickle cell disease does not get the attention it needs in any respect, in terms of research dollars or care or public awareness.”
The Community Foundation has given the association over $40,000 dollars in grant funding for the project since 2009.
Ginsberg said that he is hopeful that the center will “raise the profile of the disease” and subsequently “elevate the services available for people who have [sickle cell disease] or may have [the trait].”
The Sickle Cell Disease Association of Southern Connecticut was founded in 1985.