• Sonny Long •
• Originally published July 21, 2009 at 7:33 p.m., updated July 22, 2009 at 12:28 a.m.

• IF YOU GO

  WHAT: Sickle Cell Anemia Awareness Day and Support Group Meeting

  WHEN: 10 a.m., Saturday

  WHERE: God's Church, 402 N. East St., Victoria

  INFORMATION: 361-894-7635

  For additional information on sickle cell disease, visit any of these ...

• SHOW ALL »

IF YOU GO

WHAT: Sickle Cell Anemia Awareness Day and Support Group Meeting

WHEN: 10 a.m., Saturday

WHERE: God's Church, 402 N. East St., Victoria

INFORMATION: 361-894-7635

For additional information on sickle cell disease, visit any of these Web sites: www.sicklecellaustin.org, www.sicklecelldisease.org, www.ascaa.org or www.cdc.gov/ncbddd/sicklecell/faq_sicklecell.htm

BY THE NUMBERS

More than 70,000 people in the U.S. have sickle cell disease.

Sickle cell disease occurs in 1 in every 500 black births and 1 in every 900 Hispanic births

2 million people have sickle cell trait.

1 in 12 blacks and 1 in 16 Hispanics have sickle cell trait

SOURCES: Centers for Disease Control and American Sickle Cell Anemia Association

Carmia Green knows firsthand the pain of sickle cell disease.

"I'd rather have 10 children at once than go through a sickle cell crisis," said the 42-year-old mother of three who has formed the South Texas Sickle Cell Anemia Association in Victoria. "Sickle cell is the worst pain that anyone can go through and you never know how long a crisis is going to last."

Sickle cell is an inherited blood disease. A person with sickle cell has abnormal hemoglobin in the red blood cells that can cause them to be shaped like a sickle. These cells are weak, sometimes get stiff and can get trapped in the blood vessels, hindering blood flow. This can sometimes cause intense pain anywhere in the body.

In addition to the episodes of severe pain, people with the disease are vulnerable to infections. They may also suffer from jaundice, deterioration of joints, kidney infections, strokes, blindness and a shortened life expectancy, according to the Sickle Cell Association of Austin web site.

Green, first diagnosed with sickle cell in 1988 when she was pregnant with twins, hopes to bring sickle cell sufferers, and anyone else who wants to know more about the disease, together.

"If you, your child or other family member has sickle cell please come and share your stories of struggle and triumph with the rest of the group. There is strength in numbers," she said.

The newly-formed association, a branch of the Austin-based Marc Thomas Foundation, is hosting Sickle Cell Disease Awareness Day on Saturday. A support meeting will be at 10 a.m. at God's Church, 402 E. North St.

Green's children carry the sickle cell trait, but do not have the disease although her 3-year-old granddaughter does.

Green pointed out that sickle cell anemia knows no racial boundaries and can affect blacks, whites and Hispanics.

According to the Texas Department of State Health Services, blacks have the highest rate of sickle cell disease and sickle cell trait in the U.S. About one in every 400 black babies is born with the disease. Other sources put that number at one in 500. About one in every 12 black is born with sickle cell trait. All newborns in the U.S. are tested for sickle cell disease and trait.

The differences in having the disease and having the trait are enormous.

According to the Texas Department of State Health Services, sickle cell trait is an inherited blood condition. It is not a disease. It occurs when a person has one gene for normal hemoglobin and one for sickle hemoglobin. Most people with sickle cell trait lead normal lives, but may have problems with extreme physical activity. People with sickle cell trait usually show no outward signs of it and it is not contagious. People with the trait will not get sickle cell disease.

Contrast that with a pain crisis that those who suffer from sickle cell disease often suffer. Green said a sickle cell crisis can be brought about by numerous triggers including the stress of daily life, work or the 100-degree Texas heat.

Sickle cell disease sufferers learn to medicate themselves, but a severe pain crisis could mean a trip to the emergency room, said Green, who works in customer service in Victoria.

When she first moved to Victoria from Wharton in 2002, Green said there wasn't a lot of awareness about the disease.

"I basically had to tell them how to treat me," she said, noting that things have improved since then. "I thank God that I now have a good doctor who has given me nothing but excellent care and is willing to seek out information and learn more about the disease."

Green is hoping the new association and support group, too, will be a source of information and inspiration for those who share her disease.

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