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Kay in August
News about Kay and her fight against the JC Virus that causes PML -- posted by her family.
Kay in August
SUMMARY
Kay returned home from UW Medical Center and died on Thursday, December 28, 2006. She was diagnosed with Progressive Multifocal Leukoencephalopathy (PML), a rare and deadly demylinating disease of the central nervous system. PML is caused by reactivation of a virus (JC Virus) that is latent in 86% of adults. Reactivation occurs in immunosuppressed individuals, including some chemo-therapy patients. Kay's visitors are not at risk.
The virus destroys cells that produce myelin, a fatty substance that insulates a neuron's axons and protects the transmissions therein. Areas of demylination appear as brain lesions. And, the lesions' locations in the brain determine the symptoms.
Symptoms may include altered mental status, motor deficits, unsteadiness, and visual impairments. Kay was acutely aware of her symptoms which include cognitive deficits mainly related to spacial perception (hard to drive car, open gift, or remove cap from toothpaste) and the loss of some sensitivity, strength and vision on her left side. She is not in pain.
There is no cure for the PML. Kay was treated with a toxin called Cytarabine. It has stopped the progression of PML in a minority of cases like hers and has allowed a least one patient to improve, regaining lost functions. So few people with PML have been treated with Cytarabine that outcome data was not useful in predicting how Kay might respond.
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