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Symptom Study of Jan. 1998

Below are statistics based on the information submitted by CJD Voice members by completing a member profile as of 1/18/98. Symptom study as of January 1998.

Total CJD Voice Members: 101
Members involved with CJD victims: 90
(Active members:76 + Critical Info Only: 14)

Of these 90 members, 8 CJD victims are being reported by multiple family members / friends. Because of the multiple reports,
the statistics below the figure of 90 members is adjusted to a figure of 80 to represent a true summarization of CJD victim
information.

Members subscribing for informational purposes: 11

The following statistical information does not include the 11 members enrolled for information, as they are not directly involved
with a CJD victim.

YEAR OF DEATH REPORTING:
(52 out of 80 submitted a date of death = 65%)

1978 = 1
1979 = 1
1981 = 1
1987 = 1
1988 = 1
1989 = 1
1991 = 1

1993 = 2
1994 = 1
1995 = 2
1996 = 8
1997 = 30
1998 = 2

 


 

CJD VICTIM AGE REPORTING
(52 out of 80 reporting = 65%)
AGE / TOTAL REPORTED

26/1 (still living)
41/1
46/1
48/1
53/1
54/2
55/2 (1 still living)
56/2
57/3
58/3
59/1
60/2
61/2
62/3

63/1
64/5
65/3
66/1
67/2
69/4
71/2 (1 still living)
74/1
76/3
77/1
80/1
83/1
86/1

 


 

AUTOPSY REPORTING
(51 out of 80 reported autopsy information = 64%)

No autopsy done = 18 (35%)
Of the 18 with no autopsy, 9 (50%) were due to refusal.

Not sure whether autopsy was done = 2 (.04%)

Autopsy performed = 31 (61%)
Of those 31, 7 (23%) had difficulties in obtaining the autopsy.

 


 

STATE INFORMATION REPORTING
68 out of 80 members reported the state information(85%)
STATE/#REPORTED

AL/ 3
AZ / 1
CA / 4
CT/1
GA/4
IL/1
IN/3
KY/1
MN/2
MD/1
MI/1
MN/2
MO/1
MT/1
NC/1

NE/1
NJ/2
NY/5
OH/5
OK/2
PA/3
TX/2
VA/1
WA/3
WV/1
Outside the US:
Australia: 1
Canada: 2
S. Africa: 1
Israel : 1

 


 

INITIAL DIAGNOSIS REPORTING
38 out of 80 reporting initial diagnosis. (48%)

Alzheimer's = 2
Benign essential tumor = 1
Conversion reaction disorder = 1
degenerative brain disorder = 1
dementia = 3
deppression = 2
focal seizures = 1
Guillain Barre = 1
Herpes Enchilitis = 1
Inner Ear infection = 1
Multiple Sclerosis = 1
Neurodegenerative disorder = 1
Parkinson's = 2
Prion Disease = 1
Seizures = 1
sensory neuropathy = 1
stress = 2
stroke = 8

 


 

INITIAL SYMPTOMS REPORTED
26 out of 80 members reported the following symptoms as being the
first to appear. (33%)

Anxiety = 1
Cough & hoarseness = 1
dementia = 2
dizziness = 2
erratic behavior = 1
flu like symptoms = 1
forgetfulness = 1
gait/balance problems = 3
insomnia = 2
leg pain = 1
personality change = 2
ringing in ears = 1
tremors = 2
vision problems = 2
vocabulary loss = 1

SECONDARY INITIAL SYMPTOMS
25 out of 80 members reported the following symptoms as
appearing after the initial symptom. (31%)

balance loss/gait problems = 4
cough = 2
depression = 2
dizziness = 2
forgetfulness = 2
inability to write name = 2
myoclonus = 3
odor changes/excessive sweating = 1
paranoia = 1
personality/behavior changes = 1
tremors = 1
vision problems = 3
vocabulary loss = 1

SUBSEQUENT SYMPTOM REPORTING
20 out of 80 members reported the following
symptoms as appearing 3rd. (25%)

ashasya (difficulty speaking) = 1
balance/gait problems = 4
coma = 1
dizziness = 1
forgetfulness = 4
mobility loss = 2
paranoia = 1
personality changes = 2
unable to swallow = 1
vision problems = 4

 


 

LENGTH OF ILLNESS REPORTING
49 out of 80 members reported the following time frames from
onset of symptoms. (61%)

DAYS MONTHS WEEKS YEARS
22 = 1
55 = 1
77 = 1
2 = 1
2-3 = 3
3 = 8
3-4 = 1
5 = 1
5-6 = 1
6 = 1
6-7 = 2
7-8 = 1
9 = 1
10 = 1
11-12 = 12
3 = 1
6 = 1
8 = 1
9 = 1
1-2 = 1
2-3 = 2
5-6 = 1
over 10 = 2

 

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