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Regulators Debate U.S. Response to Mad Cow Disease

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The NIH could not be reached for comment at the time this story was written. However, there is now overwhelming support for the prion theory, says Joseph Berger, MD, chair of neurology at the University of Kentucky.

"I don't think it's debatable," he tells WebMD. Prions are the only possible explanation for a disease that is both inherited and infectious, he says.

Cecile Sardo is Joseph Sardo's surviving wife. After Joseph died, Cecile helped found the Creutzfeldt-Jakob Disease Foundation to help other surviving family members get through the experience. For her, the important thing is that CJD finally is moving to the forefront of federal regulators' attention, she says.

"I remember the lonely feeling. You feel like an alien," she tells WebMD, referring to the lack of community support that existed when her husband died.

Vital Information:

  • Researchers are working out the basics of what causes the rare brain disorder called Creutzfeldt-Jakob Disease (CJD) and its severe sibling, "mad cow disease."
  • Initial studies point to a protein called a prion, which may be causing the characteristic sponge-like brain damage and may even be able to be passed between people. In other cases, the disease seemed to be inherited.
  • Doctors aren't sure if the disease can be spread through a blood transfusion, but CJD has been spread through human growth hormone treatments. In June, the FDA will decide what should be done to try to control the disease.
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