The Independent
by Carly Wanna | Jul 30, 2018:
A house at the corner of Chapel and Orchard streets stood lifeless for years before Yale New Haven Hospital invited a community group to breathe new life into it, for a cause.
Since then, the Sickle Cell Disease Association of Southern Connecticut has renovating the 100-plus-year-old grand three-story building at 1389 Chapel St. into a home for the sickle cell community.
Located across the street from Yale-New Haven’s St. Raphael campus, the center will offer support for the families of people affected by sickle cell disease and promote greater awareness of the disease. The hospital is renting the building to the center for $1 a year.
According to organization board Chair James Rawlings, who spearheaded the development, it will be the first the community home dedicated to the sickle cell community in the Northeast.
“This is the first time they’ll have their own home, so they for themselves can discuss their own disease,” said Rawlings.
Rawlings said he hopes renovations will be complete for the center to open in October. The structure still requires insulation, wallboards, ceiling, flooring and electrical and plumbing finishings before it can fulfill its destiny as a two-story center, slated to include a reception, children’s waiting area, counseling facilities, conference rooms, and education centers. Rawlings spoke enthusiastically about a healing garden which will be situated behind the house.
The project has benefited from donated materials and a partnernship with the state vocational school system. The latter trade-off enables the students to practice their trade and saved the organization an estimated $125,000.
The home will offer refuge from loud noises, harsh temperatures and stress –– all of which could trigger symptoms of those who struggle with the disease.
The community home will target children in particular. Many kids affected by sickle cell can fall behind in school, Rawlings said.
An estimated 2.5 million Americans carry the sickle cell trait; the figure is one in 10 for African American babies and one in 25 for Latinos. Some 60 percent of sickle cell patients rely on Medicaid; sickle cell patients accumulate an average of $460,150 in hospitalization fees over their lifetimes.
“The social things we’re trying to deal with,” said Rawlings. “We’re doing a lot of things around what we call prevention.”
A retired Yale-New Haven exec and s a former head of the Greater New Haven NAACP, Rawlings said he aims with this project to tackle the stigma attached to the disease.
Still, those who do not suffer from sickle cell disease may still carry the recessive trait, meaning that should they have a child with a partner who also carries the trait, the child could be at risk. For Rawlings, herein lies one of the dangers of the silence clouding the disease.