SOUNDING OFF:Creutzfeld-Jakob Disease needs more awareness

In April of 2004, my husband, Michael, passed away from Creutzfeldt-Jakob Disease. At the time, neither family or friends had heard of this disease.

As a volunteer for the CJD Foundation, a national patient/family support organization located in Akron, Ohio, I would like to let your readers know that Nov. 12 is International Creutzfeld-Jakob Disease Awareness Day. It is a rare neurodegenerative (brain) disorder that is always fatal.

There are approximately 300 new cases diagnosed in the United States each year and affects one person per million worldwide.

There are four types of Creutzfeld-Jakob Disease: sporadic, variant, familial and iatrogenic.

The majority of cases of Creutzfeld-Jakob Disease (about 85%) occur as sporadic, a smaller proportion of patients (5% to 15%) develop Creutzfeld-Jakob Disease because of inherited mutations of the prion protein gene. The variant form is known as Mad Cow Disease.

Iatrogenic Creutzfeld-Jakob Disease can be transmitted through cornea or dura mater transplant; growth hormone or blood transfusion.

By formally recognizing those affected by Creutzfeld-Jakob Disease once each year, we hope to bring attention to the pain and suffering this disease brings and to acknowledge the researchers who work to find the cause and the cure.

For more information on this disease, contact the CJD Foundation at (800) 659-1991 or www.cjdfoundation.org.

It is a nonprofit organization that provides support and advocacy work on behalf of patients and families that have been affected throughout the world.