Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 Call back from Dr. Starr in Sacramanto, Ca. cjd is not reportable here unless it is an unusall case,. For instance: Younger than fifty. One was reported of a woman at UCLA, age 26, cause: growth hormone. He said there has been 30 deaths in Cal. of cjd (death citificates). Nothing of the strain found in Great Britian from meat. He asked for our site address (cjdvoice), was very , very nice. I told him that I may call him back in the future. Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 Gloria, That's great about Dr. Starr, that he is nice and interested and has the Voice website now. I was thinking I bet Saul's case was listed as sporadic CJD where they don't know the cause. Can you talk to the doctors about changing it to iatrogenic due to dura mater. Between his and 's aunt and another possible case with dura mater it would force the FDA to acknowledge that there have been CJD cases this decade in the US due to dura mater. In the October 6, 1997 meeting on dura mater they did not acknowledge it. Of course, it can be argued, if no cases, why not continue using it? Also, it is something to mention to Dr. Starr since he is interested in unusual cases. Also, it brings up a good idea: notifying all the people in all the states, provinces, whatever in Dr. Starr's position. I guess it is another project to get everything covered. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 1998 Report Share Posted October 26, 1998 I am confused about something. Has Gloria's husband's death from CJD been absolutely proven 100% to have been from dura mater? Beverly G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1998 Report Share Posted October 27, 1998 Hi, No it hasn't been proven that Saul contracted cjd from dura matter. Records have been distroyed (over ten years ago) and the hosptial is no longer. I've called to other hospitals in the area here. They have said that records are distroyed after seven years. There is no doubt in my mind that cjd was contacted from that reconstructive surgery or the instruments used in that. Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1998 Report Share Posted October 27, 1998 Gloria, Didn't you also say that is what the doctors at UCLA thought? If so, is the reason it wasn't classified as iatrogenic CJD because the old records couldn't be found? Given how long records are kept and the long incubation period of CJD, this is probably a major reason why iatrogenic causes aren't documented and the government can continue saying that there hadn't been cases due to dura mater this decade and to allow the US to continue using it when it has been banned elsewhere. Is there a way cases such as Saul's classified as iatrogenic? Are there health insurance records that prove dura mater was used? Debbie << Hi, No it hasn't been proven that Saul contracted cjd from dura matter. Records have been distroyed (over ten years ago) and the hosptial is no longer. I've called to other hospitals in the area here. They have said that records are distroyed after seven years. There is no doubt in my mind that cjd was contacted from that reconstructive surgery or the instruments used in that. Gloria >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1998 Report Share Posted October 27, 1998 Gloria, Did you say Saul was injured on the job? If so are there workers compensation papers that may document his treatment? Debbie << From: GlowUSA@... Hi, No it hasn't been proven that Saul contracted cjd from dura matter. Records have been distroyed (over ten years ago) and the hosptial is no longer. I've called to other hospitals in the area here. They have said that records are distroyed after seven years. There is no doubt in my mind that cjd was contacted from that reconstructive surgery or the instruments used in that. Gloria >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1998 Report Share Posted October 27, 1998 Yes, this is what Dr. Cummings at UCLA thought. You have given me an idea though. I may find more by getting the records from UCLA, which are like three years old. Not that I can do anything, but any records would help me understand more. Gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 1998 Report Share Posted October 27, 1998 He paid worker's comp. for his employers and did not for himself. I just can't think of what insurance we had at the time to cover that accident. More things to think about, you know? Gloria Quote Link to comment Share on other sites More sharing options...
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