This is the PBC PSC Gp's first PBC survey
Subj: Survey Results..................
Date: 06/05/96
SURVEY RESULTS
Almost two thirds of the members sent in surveys.....THANKS for taking the
time and energy. I don't think it really told us anything except there's
more females with PBC and age group is mainly 36 to 50 years of age.
1.* What is your liver disease diagnosis?
PBC 60%
PSC 27%
other 13%
2.* Age when diagnosed??
(29-35 yrs) 26%
(36-50 yrs) 54%
(51 PLUS yrs) 20%
3. How long have you been diagnosed? (of percents 4 members are
transplantees)
(Under 1 yr) 40%
(1-3 yrs) 34%
(5-10 yrs) 20%
(10 plus yrs) 6%
4. Were you diagnosed with another disease/disorder before getting the
correct liver disease
diagnosis?
Yes 60% No 40%
5a. Was your original diagnosis Lupus?
Yes 27% No 60% Not sure 13%
5b. Rheumatoid Arthritis?
Yes 26% No 74%
5c. Other?
Yes 53% No 47%
6. Do you still have any one of these diagnosis?
Yes 26% No 66% Not sure 8%
7. Are you diagnosed NOW with any other auto immune disorders?
Yes 20% No 80%
8. Are you diagnosed with any other diseases/disorders?
Yes 65% No 35%
9. Was liver disease diagnosed on regular labs or when diagnosing another
disease?
Labs 73% Other 27%
10. Is your doctor treating the liver disease a: Specialists, MD,
Clinicdoctors, Medical school clinic
doctors or other?
Specialist 54% GI 27% Other 19%
11.* What were you symptoms when diagnosed with liver disease?
92% surveyed showed Fatigue
89% surveyed showed joint pain
47% surveyed showed itching
13% surveyed showed chest pains
23% surveyed showed jaundice
31% surveyed showed stomach problems
35% surveyed showed other symptoms
12. How long before diagnosis did your symptoms begin?
(0 -6mo) 26%
(6 mo-1 yr) 27%
(over 1 yr) 43%
no symptoms 4%
13. What are your symptoms now?
See #11 Excluding the transplantees, percentages were the same
14. What are your allergies?
Yes 53% No 47% (common allergies were
medications, sun and seasonal allergies)
15. Are you sensitive to the sun?
Yes 48% No 44% Not sure 8%
16. What medications are you taking at this time? All including steroid
injections.
46% take Actigall 92% take vitamins
Various medications taken by members: Actigall, anaprox, aspirin, bactrim,
calcium, calcium
with D, cellcept, colchicine, eye drops, folic acid, fosamax, Furosemide,
hormoes, Imitrex, Imuran,
isoniazid, Lactulose, lasix, muran, neoral, Nortiptyline, omerprazole,
parafon forte, paxil,
plaquenil, prednisolone, Prednisone, prilosec, progesterone, prograf,
proplusid,Rifampin,
Spironolactone, stomach med,synthroid, tagamet, tenormin, trimet, tylenol
w/codeine, Ursofalk,
vitamins
17. What medications are you allergic to?
None 53%
Of those allergic to drugs: Codiene 32% Sulfur drugs 18% Aspirin
17% Cortisone
24% Other 9%
18. Do you have any food allergies?
Yes 14% No 86%
19. Do you have any special food cravings?
Yes 34% No 66%
20. Medical history: significant illnesses, operations, blood transfusions.
Too many to list.... but of those surveyed 13% had gallbladder surgery
22% had hysterectomy 22% had blood transfussions
21. Have you had a liver biopsy?
Yes 87% No 13%
22. Have you had gallbladder surgery?
Yes 42% (includes transplantees) No 58%
23.a. If you are a women did you have any miscarries?
Yes 40% No 60%
23.b. Are you post menopausal or pre menopausal?
pre 52% post 48%
24. Have you been diagnosed with anti-cardilopin antibody?
Yes 13% No 87%
25. Ethic Origin?
We're a Hinze 57......There was such a mixture, but 34% had German
26. Weight: Before DX & after DX
47% gained weight
27. Height
4'11 to 6'2.....Almost every inch
28.* Hair color
Brown 72% Blonde 20% Red 3% Black 5%
29. Skin: fair/medium/dark
Dark 14% Medium 61% Fair 25%
30. Is your sexual activity: Great, Good, Fair, Don't think about it
Great 27% Good 13% Fair 6% Don't think 54%
31. Male or female
Female 73% Male 27%
32. What State/Country do you live in?
Everywhere...........
33. Where type of area did you live when or shortly before your symptoms
first appeared.
City 33% Suburbs 56% Farm/rural 11%
34. Do you live in an area close to a toxic waste dumpsite?
Yes 8% No 83% Not sure 9%
35. Do you live in an area that has chemical factories in close range to your
home or office
Yes 13% No 87%
36. Were you raised on or did you live near farmland? (pesticide exposure)
Yes 34 No 66%
37. What type of work environment do you have?
All were good work areas...home or office
38.* Have any of your children been diagnosed with any auto immune
disorders, asthma or
arthritis?
Yes 60% No 40%
39. Do any other family members have a liver disease?
Yes 27% No 54% Not sure 19%
40. Do any family members have auto immune diseases/disorder?
Yes 60% No 27% Not sure 13%
41. Do either of your parents or grandparents have arthritis or osteoporosis?
Yes 74% No 26%
42.* Do any of your family members have asthma?
Yes 53% No 34% Not sure 13%
43. Do you or your family members have allergies?
Yes 59% No 41%
44. Are you still able to work at your job?
Yes 67% No 33%
45. Have you had to cut down your hours?
Yes 46% No 54%