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Brothers open up on dealing with sickle cell anemia

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Posted: Friday, January 28, 2011 12:00 pm

By Holly Wise

The Cove Herald

Mental strength is key to living with sickle cell anemia, a disease that plagues more than 70,000 Americans.

Copperas Cove brothers Robert II, 24, and Roderick Guice, 22, describe living with the disease as "40 percent mental, 60 percent physical."

"Your body's trying to bring you down, but your mind's like 'no'," Roderick said, standing behind the counter at his father's auto detailing business on U.S. Highway 190.

Robert II was diagnosed with the disease at age 2, and Roderick's diagnosis followed as an infant. Their father, Robert Guice I, is a carrier of the trait, and the disease exists on both sides of their family.

Two of the brothers' cousins died at ages 18 and 27 from the disease - events that sent tremors of fear through Robert II and Roderick, who were young at the time.

"Sometimes you think about (dying) when you're really sick," Robert II said.

Roderick said he thought his cousin's deaths meant he would die at an early age.

"It's very hard but you've just got to keep on pushing," he said. "You can't let anything get you down."

Plagued with the disease, the brothers function in nearly constant pain.

"It's hard to explain," Robert II said. "It's pain so intense you can't hardly concentrate on anything."

"I feel like my bones are getting crushed," Roderick added.

The pain is caused by red blood cells that, instead of being soft and rounded, are hard and sickle-shaped.

Pain is what sends the brothers at least once a month to the hospital where they are given blood transfusions and intravenous pain medication.

"With sickle cell, you practically live in the hospital when you have it as bad as us," Robert II said.

Routine hospitalizations kept the brothers out of school many times, but they did not accept that as an excuse for not getting their work done.

"We'd just do all the make-up work in one night," Roderick said. "My mom always studied with us; I guess that's why it was easy."

When Robert II was 18 and Roderick was 16, the brothers earned their high school diplomas from Hill Point Academy in Houston after taking a week's worth of exams.

Robert II said going to school was a risk to their health because of germs.

"If he has a cold," Roderick said, gesturing toward his brother. "It can put us in a crisis."

Neither of the brothers has suffered from seizures, another trait of the disease, but doctors have warned them.

"Most everything people get like seizures or heart attacks, we're at a higher risk than most people," Robert II said.

The reality of living with the disease is that the brothers are restricted in some activities, but refuse to be inhibited completely.

"They told us we couldn't swim, we swam like fishes. They told us we couldn't play sports, we played every one," Roderick said. "Everything I've wanted to do, I've always done, pretty much."

The brothers are open about the disease they play host to and think more people should understand the facts about sickle cell anemia.

"When I was really young and I'd tell (classmates) I had sickle cell, some people would stop being my friend because they thought they could catch it," Robert II said.

However, sickle cell is a genetic disease and cannot be transmitted from person to person.

"My blood could touch someone else's blood and they're not going to get it," Roderick said.

Spreading the word about sickle cell anemia is one reason the Guice family volunteers at the Sickle Cell Telethon, an annual fundraising event in Killeen.

"You have to fight it because it will get better," Roderick said. "That's what I'd say to any young person."

In his formative years, Roderick said he experienced anger and depression.

"Sometimes I just don't understand why I had to get sick on this day or why I had to get sick at all," Robert II said. He started using meditation three years ago to help cope with the disease, though he admits it's hard to concentrate in pain.

The brothers' relationship with each other is stronger because of their shared experiences.

"He knows what I'm going through; I know what he's going through," Roderick said. "He can always help me and I can always help him."

Tasks that some people might take for granted are shared between Roderick and Robert II.

"We'll cook for each other so we don't have to go anywhere because it's hard to move," Robert II said.

The nonprofit Central Texas Sickle Cell Anemia Association is hosting the 28th annual Sickle Cell Telethon from noon to 6 p.m. Sunday at The Shilo Inn in Killeen.

About sickle cell

According to information from the Sickle Cell Disease Association of America Inc., sickle cell disease is an inherited disorder that affects red blood cells. People with sickle cell disease have red blood cells that become hard and pointed, or sickle-shaped, instead of soft and round. Sickle cells can block small blood vessels, leading to tissue damage and strokes. Sickle cells also cause anemia, pain and many other problems.

There is no universal cure for sickle cell disease, of which there are several variations, including sickle cell anemia and sickle cell thalassemia. The average life expectancy of someone with sickle cell disease is about 40.

Treatment of complications often includes antibiotics, pain management, intravenous fluids, blood transfusion and surgery.

The national association estimates that more than 70,000 Americans have sickle cell disease. About 1,000 babies are born with the disease each year in the United States.

The disease originated in places where malaria poses serious threats to the health of the population, including West and Central Africa.

According to information from Harvard Medical School, the sickle cell mutation makes trait-holders less vulnerable to dying of malaria. While sickle cell disease is commonly associated with blacks, those with Mediterranean, some Middle East or Asian heritages can carry the trait.

Contact Holly Wise at hwise@kdhnews.com or (254)501-7474. Colleen Flaherty contributed to this article.

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