Citizens for Quality Sickle Cell Care is a local nonprofit organization that provides case management services and a support group for New Britain residents with sickle cell disease and their family members.
 

When Brown was younger and growing up in New Britain, this type of service was not available, and she had many challenges at the hospitals.

"I would go to the emergency room and the doctors wouldn’t know what to do, they would treat me for pain, and sometimes give me too much or too strong of a medicine, but they didn’t know what to do."

To do her best to stay out of the hospitals, Brown would take her own precautions. "When I was younger, there were things that I wanted to do, but couldn’t, like play some sports." Brown said, "And I knew that I couldn’t get too excited, or too happy or too sad. Any of those things would trigger my sickle cell. If the wind blew it could affect my joints and cause pain, so I had to learn how to relax."

Victoria Odesina, a cofounder of the group, said pain management is the major treatment for sickle cell patients.

"There are over 26 types of sickle cell, and they are different, however, there are five major types." Odesina said, "There is no cure, and some treatments like bone marrow transplants can come with a lot of side effects. Adequate management often includes reducing the levels of pain because when it is minimized it reduces the rate at which organs fail."

Odesina, who has two daughters with sickle cell, knows first hand about the benefits of a program that provides individualized care and support for people with sickle cell.

"You need somebody who can advocate on your behalf when you’re in pain, when you’re vulnerable." Odesina said, "We want people to have adequate access to resources to because many adults still live with their parents for support."

Shauntel Brown lives with her parents, although she says she’s trying to leave. She said the support has been helpful and she believes the benefits of having a support group in her corner is priceless.

"It’s nice to know that they are always there, that someone is hearing me, someone is listening to me." Brown said, "It’s nice to know that someone cares."

The gorup has received a $15,000 grant from the city to continue efforts providing case management services to New Britain residents. The challenges for the organization continue to be in the area of funding. Although it has received funding from various financial organizations, Odesina said, the needs are still great. For more information, contact the center at (860) 223-7222 or visit its Web site at www.cqscc.org.