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International Survey Results

This is not a scientific study, but we can draw some conclusions that would tend to support the current statistics especially for PV. The one big difference would be the correlation between males and females. We had females returning surveys twice as much as males – 32% males, 68% females for PV. This fact may be due to many factors as the prevailing statistics state that this disease is equal 50/50 between men and women. From the people who have contacted the Foundation throughout the 4.5 years we have been in existence, we calculate that the statistic would be more like 60/40 female to male.

The total number of surveys returned were 158. 124 were from people living in the U.S. and 34 were from overseas. The majority of people who returned the survey were patients with pemphigus vulgaris. Since the returns for the other diseases, PF, BP, and CP were so small, it would be difficult to make any real conclusions, but in certain categories we can make some generalizations.

The average age of onset is approximately 50. Average age of those returning the survey is 55. The average span of illness is from onset to the present is approximately 5 years.

The questions on ethnicity might have not been clear, but generally – 40% are Jewish females, 40% are Occidental females, 52% are Jewish males and 12% being Occidental males.

Dermatologists overwhelmingly diagnosed PV patients by 63% over Dental/O.P. who diagnosed the disease 26%, with 11% of people being diagnosed by a GP or another medical professional. 5 months was the average time a person was misdiagnosed. Two patient reported going 15 years before a correct diagnosis was made. 26 patients said they were not misdiagnosed.

For all diseases, 21% had a least one incorrect biopsy, with 75% having correct biopsies. The average time of control for PV patients was 11 months, for PF – 8.7 months for BP – 3.25 months, for CP – 7 months.

Between scalp, face, trunk for both males and females for PVoutbreak for all parts were marked in severitymoderate but could work, with the scalp and mouth being the most prominent areas. For PFScalp, face, trunk, arms/legs were also marked moderate but could work most often.

During the first outbreak and the introduction of prednisone: 75% of women had a moderate weight gain. For males the data was insufficient. 51% of males and 65% of females had muscle weakness. 41% of males and 44% of females had muscle loss. 28% of males and 31% of females had osteoporosis. 64% males and 74% of females were cushingoid. 41% of males and 61% of females had depression. 5% of males and 21% of females developed diabetes. 36% of Males and 54% of females had thinning hair. 26% of females had menstrual problems and 18% of males reported impotency. 64% of males and 69% of females had mood swings. 33% of males and 61% of females had some interference with concentration abilities. 56% of both males and females reported fatigue with 13% reporting other, which includes: aseptic necrosis, excess energy, fungal pneumonia, blindness in one eye and headaches.

The majority of both men and women did not have eye problems before pemphigus with 49% of males and 57% of females for PV reported having eye problems during the illness. 31% of males and 35% of females reported no eye problems during illness.

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The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.