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The fight for healthy blood

Published August 27. 2011 09:01AM

Some local residents are developing a rare disorder in which their bone marrow makes too many red blood cells, sometimes referred to as thick blood. The condition is called polycythemia vera (PV) and those who acquire it may have few or no symptoms. But they're prone to develop blood clots and are at increased risk of a heart attack or stroke.

Part of the treatment involves going to the hospital for regular bloodletting sessions.

Six years ago, the federal Agency for Toxic Substances and Disease Registry (ATSDR) and Pennsylvania Department of Health (DOH) identified an unusual cluster of these cases found along Ben Titus Road in Still Creek, north of Tamaqua. There, in the shadows of a former federal Superfund site, PV cases were showing up at a rate much greater than the statistical average of the general population.

As it turns out, a genetic marker known as JAK2 has been discovered in over 90 percent of cases of patients with PV. But a positive JAK2 test doesn't automatically mean a person will develop the disease.

About $8.8 million in government funding is being used to find the cause. As part of the research, Dr. Kenneth Orloff of the ATSDR offered JAK2 blood tests for area residents, just part of the research. Environmental exposures, hereditary factors and random occurrences are being examined. It's a learning experience for all concerned.

"PV has genetic predisposition but was not previously thought to be caused by the environment," said Dr. Vince Seamon, ATSDR chief investigator, at a public meeting in 2009.

Additional environmental testing is being conducted in Schuylkill, Carbon and Luzerne counties to evaluate potentially related illnesses, those categorized as myeloproliferative diseases.

Last week, Robert Gadinski, a hydrogeologist and former employee of the state Department of Environmental Protection, raised a red flag at a public forum held in Nesquehoning when he questioned if some folks diagnosed with hemochromatosis might be part of the equation. "Do the hemochromatosis people really have polycythemia vera," asked Gadinski. "There are similarities in the symptoms and in the illness itself."

Hemochromatosis is an inherited disease in which too much iron builds up in the body. It is one of the most common genetic diseases in the U.S.

These developments illustrate that progress is being made, although slowly especially so for those having to deal with PV.

Joe Murphy, Hometown, is chairman of the volunteer-driven Tri-County PV Community Action Committee (CAC), coordinated by adviser Dr. Henry Cole of Upper Marlboro, Md. The CAC serves as an information conduit and catalyst for action. The original allocated sum of $99,000 to pay for services of a medical research team and administrative costs of the CAC has been exhausted. But Murphy understands the importance of the effort and has taken the cause one step further.

In the past few weeks, Murphy dipped into his own resources to launch the Betty Kester Alliance for a Healthy Future, a nonprofit named for a special woman who was on the vanguard of the fight for a healthy environment.

Murphy's action in tribute to a local hero is meaningful and touching.

Kester was kind, caring and outspoken. She never missed a community forum and was the human face of the PV cluster from the point it was discovered. Some might say she was the poster child of PV. When experts spoke of statistics and garbled all of their confusing medical jargon, Kester was the much-needed touch of humanity. In a sense, Betty Kester was everybody's mother. Sadly, she and husband Lester, residents of Ben Titus Road, both passed away from PV.

Without question, Betty Kester would want the momentum to continue.

The alliance named in her memory will try to pick up the slack by securing grants to sustain the fight for answers and to fund medical research teams. Those willing to provide manpower or other resources should contact Murphy at (570) 668-9009.

As long as local residents care about one another, and as long as they fight for a basic, God-given right to healthy blood, Betty Kester will never really be gone.

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