Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 My husband is a victim of cjd as I have written before. I find all this with the CDC not bothering to contact family members very sad and confusing. It would be a perfect opportunity to study a victim of cjd by both the CDC and the medical community. I have never had a follow-up call or any contact from Hopkins or any of the other hospitals I have taken him to. On the CNN segment about cjd they stated that very few scientists were even studying cjd. I believe it. No one seems to care. I hear of cancer victims, aids victims, MS victims that are given the benefit of extensive research and dollars into their illness. The other day at the supermarket I was asked to donate $1 to MS. I ordinarily would not have hesitated, but I stopped for a second and thought I wonder if anyone is collecting for cjd research. Very few I am sure. I gave the dollar, and of course, I have so much sympathy for any vicitim of a devastating illness, but where is the compassion and caring for us and our loved ones. I have not found much of it. This cjd voice group is about all I have found so far, and I am grateful for it. I don't know how the rest of you feel, but I cannot understand the lack of concern for cjd. thanks for listening. Carolyn W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 Caroline, I COULDN'T AGREE WITH YOU MORE!!!! I feel that the doctors don't care as it is a rare disease & not alot of people have it out there. We're just as important! Our family members are just as important! Hopefully as a group we could get the message out to the general public. Today a co-worker told me that her brother-in-law has dementia. I'm hearing more & more about dementia & " Alzheimer's " . I know that it's not CJD but it's the closest thing. I read all of your letters & they bring back memories of my mother. As I read your letters I jot down some notes of signs & symptoms that my mom also had. After I feel I have all of the info. I'll type up a report & keep it on file. (so that it may help me and my siblings in the future) Like I've said before, I still have to get letters out to doctors that saw my mom. Letters stating that she was diagnosed w/GSS (similar to CJD). They need to know & to care & to do something about it!! Taking care of my siblings & my dad is a big job so it's been hard to find the time to do this. Take Care, e Quote Link to comment Share on other sites More sharing options...
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