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Symptom Study of July 1998

 

Below are statistics based on the information submitted to CJD Voice by completing a member profile as of 7/4/98.

Total CJD Voice Members: 242
Members involved with CJD victims: 223
Of the 242 members, 19 of those are interested parties or researchers.

Of these 242 members, some victims are being reported by multiple family members/friends. Because of the multiple reports,
the statistics below have been adjusted so as not to duplicate cases reported.

The following statistical information does not include the 19 members enrolled for information, as they are not directly involved
with a CJD victim.


 

Year Of Death Reporting
112 cases reporting date of death information
 

1968 = 1
1973 = 2
1974 = 1
1978 = 1
1979 = 1
1981 = 1
1982 = 1
1985 = 2
1987 = 2
1988 = 1

1989 = 1
1991 = 3
1992 = 2
1993 = 2
1994 = 7
1995 = 9
1996 = 14
1997 = 44
1998 = 17

 



 

CJD Victim Age Reporting
131 cases reported age information
Age / Total Reporting
 

19/1 
28/1
39/1
40/1
41/1
42/1
45/2
46/4
48/4
49/4
50/1
51/2
53/3
54/2
55/3
56/5
57/7
58/6
59/1
60/7
61/5

62/3
63/7
64/8
65/5
66/1
67/4
68/3
69/9
70/1
71/5
72/2
74/5
75/3
76/3
77/2
78/2
79/1
80/1
81/1
83/1
86/1
 


 


 

Autopsy Reporting
101 cases reported autopsy information
 

No autopsy done = 45
Of the 45 with no autopsy, 13 were due to refusal

Not sure whether autopsy was done = 2

Autopsy performed = 52
Of those 52, 18 had difficulties in obtaining the autopsy.

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State Information Reporting
139 cases reported the state information
STATE / #REPORTED
 

AL/4
AZ/2
CA/8
CO/1
CT/2
FL/10
GA/6
IA/2
IL/8
IN/3
KS/1
KY/2
LA/3
MA/4
ME/2
MD/1
MI/1
MN/3
MO/1
MT/1
NC/3

NE/1
NJ/5
NY/9
OH/9
OK/3
PA/5
PN/1
TN/1
TX/6
UT/1
VA/3
WA/7
WI/1
WV/2
Outside the US:
Australia: 3
Canada: 7
S. Africa: 1
Israel : 1
Great Britain: 1
Spain: 1

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Initial Diagnosis Reporting
99 cases reporting initial diagnosis
 

Acquired epilepsy =1
Athritis in cerebral zone = 1
Alzheimer's = 5
Ataxia(OPCA) = 1
Benign essential tumor = 1
CJD=8
CNS vasculitis = 1
Conversion reaction disorder = 2
degenerative brain disorder = 1
dementia = 10
depression = 13
focal seizures = 1
Guillain Barre = 1
Hardening of arteries to brain = 1
Heart problem, CNS = 1
Herpes Enchilitis = 1
Influenza = 1
Inner Ear infection = 2
Multiple Sclerosis = 3
Nervous breakdown = 1
NONE (dr's didn't know) = 6
Neurodegenerative disorder = 1
Parkinson's = 5
Prion Disease = 1
Seizures = 1
sensory neuropathy = 1
stress = 4
stroke = 18
TIA and low blood sugar = 1


Initial Symptoms Reported
98 cases reported the following symptoms as being the
first to appear
 

Anxiety = 1
ataxia = 1
burning in legs = 1
confusion = 3
Cough & hoarseness = 2
dementia = 2
depression = 8
disorientation = 1
dizziness = 8
erratic behavior = 1
fatigue = 2
fingers wouldn't move = 1
flu like symptoms = 4
forgetfulness = 12
gait/balance problems = 11
hallucinations = 1
headaches = 2
hearing loss = 1
insomnia = 4
leg pain/kicking in sleep = 4
loss of fine motor skills = 1
muscle loss = 1
myoclonus = 3
personality change = 7
ringing in ears = 1
tremors = 2
vision problems = 9
vocabulary loss = 2
weight loss = 1


Secondary Initial Symptoms
97 cases reported the following symptoms as appearing after
the initial symptom
 

anxiety = 3
aphasia = 1
ataxia = 3
balance loss/gait problems = 22
blindness = 2
confusion = 2
cognitive loss = 3
cough = 2
delusional = 1
dementia = 4
depression = 1
dizziness = 5
forgetfulness = 14
headaches = 1
inability to write name = 2
myoclonus = 3
nausea = 1
odor changes/escessive sweating = 1
paranoia = 1
personality/behavior changes = 4
seizures = 2
speech problems = 5
tremors = 3
vertigo = 1
vision problems = 7
vocabulary loss = 1
weight loss = 1


Subsequent Symptom Reporting
93 cases reported the following symptoms as appearing 3rd.
 

ashasya (difficulty speaking) = 5
balance/gait problems = 21
coma = 2
confusion = 4
dementia = 7
depression = 3
dizziness = 2
forgetfulness = 13
hallucinations = 2
insomnia = 2
muscle pain/stiffness/weakness = 3
myoclonus = 2
paranoia = 1
personality changes = 3
pschosis = 2
sundowning = 1
startle reflex = 1
ringing in ears = 1
tingling in fingers & toes = 1
tremors = 3
unable to swallow = 3
vision problems = 9

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Length Of Illness Reporting
119 cases reported the following time frames from onset of symptoms.
 

DAYS MONTHS WEEKS YEARS
22 = 1
55 = 2
77 = 1
90 = 1
1 = 1
2 = 6
2-3 = 4
3 = 14
4 = 7
5 = 5
5-6 = 1
6 = 8
6-7 = 2
7-8 = 6
9 = 2
10 = 1
11-12 = 17
3 = 2
5 = 3
6 = 4
7 = 2
8 = 1
9 = 1
10 = 2
1-2 = 5
2-3 = 5
5-6 = 1
over 10 = 2

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