Cure CJD

Heather Larson's experiences in helping find the cure for CJD

Thank you for your emails about CJD

I have received two separate emails from CJD families in different foreign countries this weekend. Each person is asking me to tell them about treatment options for a suspected case of CJD. At first, I was confused and wondering who is giving people the idea that there is a treatment.

Then I realized that we all go to the hospital expecting swift diagnosis, treatment, and a cure for illness. I really want to see the day we live up to our own human expectations. I’m happy to be a small part of it.

With that said, I will now struggle to answer each email. It never gets any easier. I know someday it will because some day I will be able to give them the answer they want. Of course, if that were really true, people won’t be emailing me at all. That is the goal. Someday, we will have a clinical diagnosis, a treatment, and a cure.

Right now, we don’t.

As it always goes, I will email these nice people and answer their questions. I am sure they won’t email me back ever because that’s usually how it goes. Sometimes a miracle happens and a patient is diagnosed with something other than CJD and that is when I get a return email at some later date, which is nice. I am always happy to hear there is one less case of CJD. I wish there were no more cases of CJD. Until then…

I regret to inform you there is no clinical diagnosis of this disease. The only definitive diagnosis comes from autopsy. I also regret to inform you there is no treatment. There is nothing to treat or cure. Not right now. I have heard there may be a drug for humans in 3-5 years, but I wouldn’t get excited yet because medical progress is slow.

Other families have told me they have used drugs to make the person with the suspected case of CJD comfortable. In my experience, this was not possible. There was nothing we could do to make my mother comfortable. However, the course of disease in my family is extremely quick. My mother and uncle died at about the one-month mark. Those of you who do not share my family’s specific E200K mutation will unfortunately find the course of disease may last for months.

I can’t imagine how hard that must be. I’m being completely candid here; I reached my breaking point the morning of the day my mother died. I don’t think caregivers get nearly the credit and support they need. But that will be another post on another day. Today, there are emails to return.

~Heather Larson

On Twitter: @heatherlarson

hotwords (at) mac (dot) com

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July 29, 2012 - Posted by | Uncategorized | , , , , , , ,

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