Guest guest Posted December 1, 1998 Report Share Posted December 1, 1998 My mother was just diagnosed with CJD. We are from Taunton Massachusetts. We are bringing her home from Mass General Hospital located in Boston, Mass., to die. This is just blowing our minds apart! When we met with her team of Doctors, I sensed a pattern of denial! Everyone had a different number of people that they have had as patients at this hospital. Some of the doctors, at different times, said it was very rare, only a few, while the nursing staff told my sister and I that they see many cases.I have contacted the Mass. Infectious Disease Control office, and have an appointment with the head of their department 9 A.M. tomorrow morning. SOMETHING JUST DOSEN'T JIVE!!! We have no way of finding if there have been any cases are in the Taunton area ( and as I believe, many other poor souls sitting in phyciatric wards, getting miss diagnosed). My mother was very quick. She became very confused on November 1st, 98. SEE HOW FAST IT CAN BE! My dear mom is already on a feeding tube, and very sick. She cannot talk, and is already showing sign of lung involvement. We are devastated at what is happening to our DEAR MOTHER, and it will be our mission, to find out! My sister and I have different views on the source of my mothers illness, but one thing hold true. ...we are both learning and talking to the public about this rare illness...THERE IS ABSOLUTLY NO PUBLIC AWARENESS ABOUT THIS DREADFUL DISEASE! Sorry for my anger...but I am mad and very hurt and scared that I am losing my best friend! Thank you for reading this..nne & Suzanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1998 Report Share Posted December 2, 1998 nne, please accepy my sympathies and condolances. It is a tragic thing to go thru. Please ask them about how many people have died form death code 046.1 (CJD) and how many from 290.1 or 331.0 which are dimentia and Ricks/Alzheimers respectively. They should have that data available or can get it and these are international codes - standard in every country. Ask them to summarize by year for the last 10 years. Their data for this year will not be up to date, but they should have 1997 and previous years data. A high number in dimentia scares me as it is a symptom, not a disease. Please advise what they tell you. Mel in SLC CPUB90@... wrote: > From: CPUB90@... > > My mother was just diagnosed with CJD. We are from Taunton Massachusetts. We > are bringing her home from Mass General Hospital located in Boston, Mass., to > die. This is just blowing our minds apart! When we met with her team of > Doctors, I sensed a pattern of denial! Some of the doctors, > at different times, said it was very rare, only a few, while the nursing staff > told my sister and I that they see many cases.I have contacted the Mass. > Infectious Disease Control office, and have an appointment with the head of > their department 9 A.M. tomorrow morning. SOMETHING JUST DOSEN'T JIVE!!! We > have no way of finding if there have been any cases are in the Taunton area ( > and as I believe, many other poor souls sitting in phyciatric wards, getting > miss diagnosed).She became very confused on November 1st, 98. My dear mom is already on a feeding tube nne & Suzanne > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 -- I just LOVE this new [send page] button..............[new to me] http://www.independent.co.uk/sindy/stories/A0702922.html Quote Link to comment Share on other sites More sharing options...
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