Symptom Study Jan '98

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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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