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Get screened, get informed about rare blood disorder

Cooley's anemia disproportionately affects people of Mediterranean descent.

By NICOLE J. HUTCHESON
Published February 20, 2007

A million Americans have a blood disorder that can lead to a life-threatening form of anemia and don't know it.

And because thalassemia, or Cooley's anemia, disproportionately affects people of Mediterranean ancestry, a local group is working to raise awareness of the disorder in North Pinellas.

On Sunday, the American Hellenic Educational Progressive Association will sponsor free screenings for the disorder at the Holy Trinity Greek Orthodox Church in Clearwater.

"We decided to get the word out to all the orthodox churches," said Sonja Stefanadis, the former president of the association's women's auxiliary. "People may have heard of it, but again it's about educating them that this is what you've got to be tested for."

Thalassemia affects 100,000 newborns a year, so children 6 and older, as well as young adults in their childbearing years, are encouraged to be screened.

While Cooley's anemia occurs mostly in people of Mediterranean ancestry, it also appears in those of Middle Eastern, Indian or Asian descent.

Like sickle cell anemia, the blood disease shows up as either a genetic trait or a more severe form.

In more serious cases, the patient's blood cannot create the protein that makes hemoglobin. It's a condition that can cause life-threatening anemia and requires regular blood transfusions, said Gina Cioffi, the national executive director of the Cooley's Anemia Foundation.

If two people with thalassemia trait have a baby, the child could inherit the disease. That's why blood screening is important.

"A screening: it's our best defense," Cioffi said from the foundation's New York City office.

This year, the foundation began teaming up with several cultural organizations like the Hellenic association to spread the word about the imperativeness of screening for the disease.

Locally, the association, which began in the 1920s to advocate for Greek immigrants, is leading the charge in screening.

During the screenings, participants will have their red blood cell volume counted. If it measures below 75, it can be an indicator of the trait. After that finding, the person would be recommended for additional testing by a doctor.

Stefanadis and her husband, Gus, the president of the national Hellenic association, have sponsored the screenings in Clearwater three times since they moved to the area from New Jersey in the 1970s. Awareness has grown with each screening. But more work needs to be done, she said.

"If two people with the minor trait have a baby, you're doomed to a life of transfusions," Stefanadis said. "So our mission right now is to get the word out and educate as many people as we can."

The foundation has seen an increase in the disease partly because of the influx of immigrants from Asia and the Middle East, and partly because of the success in testing detection, Cioffi said.

"No. 1, it's rare, and No. 2, people are carriers and don't know, passing it from one generation to the next," she said. "So, it's a constant level of attention to it that we have to make."

Nicole J. Hutcheson can be reached at njohnson@sptimes.com or 727 445-4162.

Fast Facts:

Get checked out

What: Free blood screening for thalassemia, or Cooley's anemia.

When: Noon to 2 p.m. Sunday

Where: Holy Trinity Greek Orthodox Church, 409 Old Coachman Road, Clearwater

To learn more: (727) 447-2715

[Last modified February 19, 2007, 23:01:32]