What Terry and I Talked About

Terry Schwan and I talked about so many things last week when we met face to face, so I’m going to be blogging about each topic individually. The thing Terry said to me that stood out the most was about the U.S. blood supply.

But first, some background on Terry and I. I lost a parent, my mother at the age of 56; Terry lost a son Jeff at the age of 26. My mother’s case was familial, while Jeff’s autopsy showed his was sporadic. Technically, a 26-year-old isn’t supposed to get sporadic CJD. When someone this young dies of CJD, it is usually the variant form, or the form caused by BSE in meat. Terry thinks Jeff could have contracted an American strain of BSE...how else could you explain how someone so young died of CJD? And there are many who have died in thier 20’s, 30’s and 40’s of this disease that no one is really safe. This disease defies all odds and acts unpredictably. With so many clusters of the disease and so many young people dying of it, I hope I can tell as many of their stories right here, at CJDTalk.

If you want to read more about Jeff Schwan, check out this story I wrote for the Paradise Valley Community College newspaper, the Puma Press:

http://www.pvc.maricopa.edu/puma/may05/cjd_schwan.html

Now, onto the blood supply issue. Terry and her husband Steve won’t be attending the family conference this year in DC as I will be, but they have attended in the past and say it keeps getting better every year. Since I plan to go this year and since it will be my first time attending the conference and going to Congress, Terry gave me some advice.

The great thing about going to the CJD Family Conference is that you get to talk to the doctors and ask questions. Everyone gets to share ideas and insight, and you get a chance to meet Dr. Gambetti from the NPDPSC. (He did my mom’s autopsy). Then you get to go to Congress so you can have a shot at making your state’s representatives care about CJD issues in America.

Terry told me there is one certain way to get the attention of doctors and politicians alike – tell them how much this disease is affecting the blood supply. That’s when their ears perk up, so this is what I will talk about. Terry said to imagine how many people are no longer allowed to donate blood in the U.S. because they lost a family member to CJD. I am not sure what the estimate would be, but it would be huge. Everyone who has lost a family member to CJD is forbidden to donate blood. I can’t donate blood, organs or tissue. Ever. Period. And I don’t even know if I carry the mutation. I don’t even know if I’d be allowed to donate blood if it were proven I didn’t carry the mutation. I just know my mom died of fCJD, confirmed by Dr. Gambetti’s autopsy at the NPDPSC.

So that will be the angle for CJD families to take, seeing as it has worked for Terry. I will be lobbying for research for a cure in humans and animals. (I know, why not shoot a little higher, right?) My state, Arizona, doesn’t have a lot of problems to contend with. CJD is a reportable disease in this state, we are overrun with hospices and care centers since our population is so grey, and we have some of the best hospitals. (Barrow, Mayo). I had no trouble arranging my mother’s cremation since I live in a big city. So my choice is to lobby for biotech and other research into CJD. I may talk to a friend about lobbying for CWD-related issues too, but then again, that may be for another time.