Creutzfeldt-Jakob Disease (CJD)

Creutzfeldt-Jakob Disease (CJD) is a rare, fatal brain disease. Our family is saddened and horrified that we must learn the characteristics and the path of this disease.

My son, Tim, is engaged to be married in the Spring to Krista. Until 4-5 weeks ago both families were filled with happiness for our children and excitement for the Spring wedding. Preparations had already begun.

THEN, Krista's mother, Janelle (age 54), started doing some strange things. She started to walk differently. She started to forget things. Her personality started to change. The family took Janelle to their local emergency room at Lutheran Hospital in Ft. Wayne. She was given an EKG, a CT scan of the brain, a CT scan of the abdomen, an MRI of the brain, a spinal tap, and blood test. The neurologists there could reach no diagnosis. They released her and set up an appointment with a neuropsychiatrist the following week. The results of the neuropsychiatrist indicated Creutzfeldt-Jakob Disease (CJD). What? Who's heard of that? What is that? What does this mean. They told the family Janelle had maybe two months to live. What? Are you kidding? Is any of this real?

The family was told there was only one doctor in the state of Indiana who knew anything about CJD. He is at IU Med Center in Indianapolis. An appointment was made for her and the family in two days. After a lengthy analysis the family was told the dignosis of CJD was correct. Based upon when symptoms began and Janelle's present condition, the family was told she had between 2-6 WEEKS left. ARE YOU KIDDING ME?

So, we all started searching out information about CJD. I found a great deal of information at www.cdjfoundation.org.

Here's a short summary.

Most of us know about viruses and bacteria but we don't know about prions. A prion is a protein which has become infectious. CDJ reportedly affects about 1/1,000,000 worldwide. There are three kinds:
1. Sporadic (85%) - occurring for no known reason
2. Familial (10-15%) - genetic mutation passed from parent to child
3. Acquired (maybe 1-2%) - very specific types of contact

The Familial form can be detected through a blood test, so we are waiting right now for the results of that test. It seems unlikely based on circumstances.

In a summary as to its course, I would describe it as "Alzheimer's on speed". This infection just destroys your brain proteins until the physical body shuts down.

Yes, it's horrible!

God is good and will sustain Krista and all her family through this very great sadness. But 2009 will always be the Autumn of that terrible disease.

If you have questions, I will try to find answers.