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Parents with children who have sickle cell disease raise awareness

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Posted: Monday, September 5, 2011 12:00 pm

By Rose L. Thayer

Killeen Daily Herald

Sandra Williams-Anderson had never heard of sickle cell disease until she became pregnant.

Doctors informed her that since she and the father of her child carried the sickle cell trait, there was a 25 percent chance their child could be born with the disease.

"She's my one in four," Williams-Anderson said of her daughter, Djenne Williams. The Killeen High School student died in March; she would have turned 16 in July.

"Having a child, I never expected that I would have to do any of this. I thought I would go first," Williams-Anderson said. "I'm planning a sweet 16 birthday party; what happened?"

Instead of picking out a dress and making plans for a party, she had to plan a funeral. "I had to trick myself in my head that this was her sweet 16 and that's how I got through," Williams-Anderson said.

It was spring break and Djenne hadn't been feeling well for a couple days, but her mother said she was adamant that she didn't want to go to the doctor. While cooking Djenne's favorite dinner, spaghetti and cheesy bread, Williams-Anderson brought her daughter a bowl of grapes to snack on while she rested in bed.

She went back down to get her some Gatorade, and when she returned, she made a joke to her daughter. "She didn't laugh, and I was like, 'I made a funny, what's wrong?'"

That's when Williams-Anderson realized her daughter wasn't breathing.

A hospital regular

Djenne was diagnosed at 1-month-old with sickle cell disease, spending much of her life in and out of the hospital. By age 5, her spleen, gall bladder and appendix had been removed.

"The up side was, when she wasn't sick she was normal," Williams-Anderson said.

"(Sickle cell disease) is manageable, but there's not a cure for it," said Dr. Mani Subramanian, hematologist in Killeen.

About 10 percent of the population carries the inherited sickle cell trait and 1 to 2 percent have the disease. About 1,000 babies are born with the disease each year in the United States.

Normal red blood cells are pliable and round, squeezing easily through the body. When people have sickle cell disease, which requires inheriting the trait from both parents, their hemoglobin mutates - crystallizing and changing the shape of the red blood cell to have sharp edges, resembling a sickle. Patients often suffer from episodes of extreme pain and with severe anemia.

"(Sickle cell patients) end up in the hospital from a very young age to all their life, anywhere from two to 10 times a year for pain management," Subramanian said. "That's their lifestyle. They spend a lot of time in the hospital."

Taking charge of life

Many patients, such as Jazmine Mike of Killeen, have to go into the hospital once a month for a blood transfusion, which takes about six hours.

Mike has struggled with the disease all her life, but has never let it stop her. The 19-year-old graduated from Ellison High School in May and now works at the YMCA's after-school care program in Killeen. She takes seven medications and has a permanent port-a-catheter in her chest.

Despite everything, Mike's mother, Jackie Bates, said they stay very positive and hope to use their situation as an opportunity to educate others about the disease.

"I want to be an advocate, not just for my child, but for others too," Bates said. "It's a serious disease that can take your life. We're blessed. We've almost lost her three different times, but I saw her graduate."

Both Bates and Williams-Anderson have sons who are carriers of the sickle cell trait, so they work with the local sickle cell organization to educate people about getting tested.

There are no symptoms in carriers of the sickle cell trait, but if they have a child with another carrier, such as Dejenne's parents, there's a 25 percent chance the child will have sickle cell disease. "Testing is widely available and easy to get done," Subramanian said.

Even though Williams-Anderson's sons are only 2- and 3-years-old, she's preparing them about their medical history and status. "I have to educate my boys that they have the trait, and if they get with someone who also has the trait, they could have a son or daughter, and I could have a grandkid with the same issues as Djenne."

Williams-Anderson said she hopes that through education and awareness she can help just one person. "It's like a journey for me. I always knew when I had her, God gave her this for a reason. She did her part with carrying the disease for almost 16 years. I can't imagine the things she felt," she said. "I really want to do something for her, and I feel like this is a way."

Contact Rose L. Thayer at rthayer@kdhnews.com or (254) 501-7463.

Follow her on Twitter at KDHreporter.

More information

September is sickle cell awareness month. The Central Texas Sickle Cell Anemia Association works to educate the community about the disease. For more information about the association's local efforts, visit the website, www.centexsicklecell.org.

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1 comment:

  • OliverChiapco posted at 12:51 pm on Tue, Aug 21, 2012.

    OliverChiapco Posts: 0

    Living life with sickle cell disease can be very difficult. Fortunately, in this modern day and age, sickle cell can be dealt with much more hope and optimism. Cure can be achieved. But for many, it remains hard to pin down.
    AWARENESS is the key. There are millions of people of African, Hispanic, Asian Indian and Mediterranean descent out there who are carriers of the sickle cell gene which can be passed on to the next generation. Since those with sickle cell trait (carriers) live essentially normal lives, they may overlook the fact that they carry the gene that can dramatically diminish the quality of life of a child who happens to inherit the gene from either parent (if both parents are carriers).
    Hence, awareness and education are vital. If an individual is a carrier or suffers from sickle cell disease, due diligence must be observed when choosing a partner.
    www.thefinalrace.net