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Sickle Cell Anemia: Living with the pain in 2010

Gloria Rochester could not hold down a job while caring for her daughter, Tyeisha, who was diagnosed with sickle cell disease at 18 months.

But through the disease, Rochester discovered her true calling: founding the Queens Sickle Cell Advocacy Network in 1997.

“After [Tyeisha] was diagnosed, there was no awareness and resources to help families when coping with a child with such a deadly disease,” Rochester said during an open house Friday for the organization at 207-08 Hollis Ave. in Queens Village. “I saw the need for an organization where the families and patients could meet and share ideas and information and coping skills.”

Sickle cell disease is a genetic blood disorder where red blood cells are shaped abnormally, like a sickle. A variety of complications, including the need for frequent blood transfusions, arise in those with the disease. Life expectancy for those with sickle cell is 42 years for men and 48 years for women.

Doctors told Rochester that Tyeisha, born in 1973, would not live past her 20th birthday. She is now 37 and living in Florida.

Rochester said she founded the organization out of her St. Albans basement.

“It grew immediately where people were looking to understand the issue of coping with a child with sickle cell,” she said. “The legislators saw me doing a lot for the families. The legislators became aware of the events, workshops and mentoring to the young people who fall between the cracks.”

In 1990, Rochester’s organization was given $10,000 from state Assemblywoman Barbara Clark (D-Queens Village) and $5,000 from then-City Councilman Archie Spigner to rent an office on Linden Boulevard in St. Albans.

QSCAN operated at that location for 14 years.

“We outgrew the place because the families couldn’t come upstairs due to their condition,” Rochester said, referring to intense pain suffered by sickle cell patients.

The organization moved into its current home in September.

“Today is a milestone for us,” Rochester said, referring to the open house, where QSCAN volunteers informed anyone who walked through its doors about what the organization does.

Sickle cell patients at hospitals, including Queens Hospital Center, Jamaica Hospital and the North Shore-LIJ Health System, are referred to QSCAN for emotional help in dealing with their disease.

“This place is going to be a home and this is our home,” Rochester said.

Tyeisha Rochester said she appreciated how her disease inspired her mother to be an advocate for others like her.

“I’m glad to know I have a strong mother who nurtured me and kept me alive, literally,” she said. “It makes me feel very proud to know that someone has a passion out there to care. A lot of us are dying for no reason. They need a lot of advocates out there.”

Tyeisha said her mother was unable to keep jobs because she was in the hospital frequently because of sickle cell disease.

“If she did not have a mouth to speak out, we wouldn’t be where we are today,” she said. “I’m very proud of QSCAN for years just growing into one big network organization.”

Linda Smith, a past vice president of QSCAN and a current member of the organization’s board of directors, said her parents were both sickle cell carriers and she and her six sisters all acquired the disease. Only three of the girls are alive today, she said.

Smith said there is an easy solution to eradicate sickle cell disease.

“All it takes is not marrying someone with the trait,” she said. “What would you rather? Would you rather be selfish or have a child who’s going to be in the hospital for days and eventually die?”

Reach reporter Howard Koplowitz by e-mail at hkoplowitz@cnglocal.com or by phone at 718-260-4573.

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