About ITP

Survey Results

Surveys were sent to a small, random group of people with ITP in 1997. Twenty-eight forms were completed and returned. These results are the tabulated answers. Not everyone answered all the questions, so some results may be from a slightly smaller population.

About Us

The survey replies are from many states and a few from outside of the US.
There is no US geographical area that predominates or is missing.

Age: Average 49.6 years

Female: 71 %

Time with ITP: Average 8.6 years, less than 10 years: 75%

Current counts (thousands/cu. ml) :
less than 30 - 21%
30 to 150 - 50 %
over 150 - 29 %

Reported companion diseases: 15 %

Had ITP as a child: 7 %

Have someone in the family with a blood disease: 21 %

Traditional Treatments

Percent of respondents who had these treatments (this is not a statement of success)

Prednisone: 93 %
Splenectomy: 64 %
IVIG: 54 %
Danocrine; 43 %
Dexamedrine: 29 %
Prosorba A column: 25%
Win Rho 11 %

Other: colchicine, dapsone, valium, plasmaphoresis (not prosorba A),
platelets coated with vinblastine, taneramic acid, sandoglobulin, calcium with
vit D.

Splenectomy effectiveness
(time for platelets to return to pre-splenectomy count):

two months or less - 50 %
Between two months and two years - 22%
more than two years - 28 %

Alternative Treatments

Tried alternative therapies (excluding Vit. C and diet): 43%

Tried vitamin C specifically for ITP: 36 %

Changed to healthier diet: 41 %

Life with ITP

Pleased with medical care: 50%

Offered support or support groups: 7%

Number of hospitalizations, including splenectomy: 2.2 average

Had platelet transfusions: 39 %

Estimated cost of treatment, including insurance company payments: $216,000 average under $150,000 66%

ITP changed life: 82%