A group in Muskogee offers support for those affected by sickle cell disease.

Lyric Kimble’s stroke in 2004 led her grandmother, Linda Hitchye to co-found the Muskogee Sickle Cell Support Group in 2005.

“I decided support was needed because of what my son, her mother and family experienced,” Hitchye, 53, said. “We have meetings about once every other month. We’re trying really to get established.”

According to the Sickle Cell Information Center, sickle cell disease is a group of inherited red blood cell disorders. A change in the hemoglobin that carries oxygen inside the cell causes it to form long rods in the cell when it gives away oxygen. These rigid rods change the red cell into a sickle shape.

Unlike normal, rounded red blood cells, sickled cells carry less oxygen and can clog blood vessels that flow to muscles and the heart. Complications from the blocking of blood flow include strokes, kidney damage and episodes of pain.

“It’s not a disease you can take lightly, because for some, you’re in constant pain,” Hitchye said.

The disease affects many nationalities, including African Americans, Greeks, Italians, and caucasians, the Sickle Cell Information Center’s Web site states.

There are several types of sickle cell disease, according to the Sickle Cell Association of America. The most common are Sickle Cell Anemia, or SS, and Sickle-Hemoglobin C, or SC. Type SS is the more crippling of the two, Hitchye said.

Hitchye said the disease affects around 1 in 400 to 500 people and she knows of eight families in Muskogee who are affected by it.

Regina Webb said that the group was formed to raise awareness around the Muskogee community.

“I just want everyone to know how the disease affects our children,” Webb said. “Or, my child.”

Webb’s daughter, Asya, was diagnosed with type SS when she was 3 months old.

“I didn’t really know about the disease until after she was diagnosed,” Webb said. She and her husband, Orlandis, 37, then decided to educate themselves.

“We really felt we needed to know everything we needed to know to care for her,” Webb, 36, said.

The Webb’s son, Landis, 5, carries the trait, but is not affected by the disease.

“We beat the odds, thank God,” Webb said. “So many families don’t.”

Hitchye said the group hopes to offer support to families through emotional means such as staying at a hospital patient’s bedside and allowing the family to rest physically and emotionally. Financially, they hope to support families by providing transportation to and from hospitals and also providing tutors to children who are unable to go to school because of pain and treatment.

Hitchye said the group has held fun days for families affected by the disease and has held walks to raise awareness about the disease in the community. She said they have plans for a third walk Sept. 9, in conjunction with National Sickle Cell Day on Sept. 5.

“It’s mainly hard trying to explain to people why she has to be hospitalized so much,” Webb said. There are many people who ask about Asya’s frequent hospital stays and about her eyes, which are jaundiced due to complications from the disease, she said.

“I get the questions, ‘Mama, why?’,” Webb said.

Hot weather can be especially dangerous for those with sickle cell, Hitchye, a registered nurse, said.

“They need to drink more water to keep hydrated,” Hitchye said. When the body loses fluid, the cells begin to clump together, she said. She describes it as an orange that has begun to dry.

“Water and nutrition is the best thing for sickle cell,” Hitchye said.

Webb said Asya, 14, can do whatever is comfortable for her in the hot weather. This summer Asya volunteered at Camp Bennett and kept water close by at all times to keep hydrated.

Hitchye said Lyric’s right side was affected as a result of the stroke, but she is now “doing well” and can see improvement when Lyric, now 8, comes to visit from Texas.

Hitchye has made changes in her life since Lyric’s crisis. She is a certified Sickle Cell Anemia counselor.

“I’m willing to counsel anyone that has discovered their child has the trait,” Hitchye said.

How to help

September is National Sickle Cell Awareness Month. The Muskogee Sickle Cell Support Group is hosting a Walk-A-Thon. The walk will begin at 10 a.m. Sept. 9 at Fourth Street and Elgin Avenue at the New Centennial Trail, will proceed to 24th Street and return to the starting point.

Donations will be accepted. For information: Linda Hitchye, 348-0261; Regina Webb, 687-4699; or Havana Lasley, 687-5056.

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