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THANK YOU TO OUR SUPPORTERS:
OUR BODIES OURSELVES
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If you have already filled out the survey, THANK YOU.
IF NOT ....
The purpose of this website is to SURVEY PATIENTS who have symptoms of frequency and urgency, and sometimes burning and other pelvic pain. These are clinical terms for the feeling that one has to urinate, pee, without letup, for weeks, months or years. Sometimes there are bladder infections also.
There have been many diagnostic names given to these symptoms, because the cause of cystitis is unknown. Most of these names are at the top of this page. For the purpose of the survey, we are using the term "cystitis."
This survey asks you, cystitis patients, whether the urological tests and treatments you have experienced improved your symptoms, made symptoms worse, or had no effect. It also asks about "alternative" or "complimentary" treatments you have tried, and how cystitis has affected your life. To my knowledge, there are no other long term follow up studies of large numbers of patients regarding the urological procedures they have experienced. Many of these procedures have been in wide use for decades.
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NATIONAL WOMEN’S HEALTH NETWORK
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| COB FOUNDATION (UK) |
INTERNATIONAL PAINFUL BLADDER
FOUNDATION (NETHERLANDS) |
| All of these organizations have given us support in the form of web links that have helped cystitis patients find the survey. |
| If you are still deciding whether to do the survey, please click on the letters of support from the National Women's Health Network and Our Bodies Ourselves, just to the left of this paragraph. |
| More than 1300 patients have already filled out the survey, and we are continuing to collect patient data. I have looked at the quantitative data and read every written answer. These answers are very moving, revealing and will be helpful to cystitis patients. |
| Some of the data have already been analyzed by Dr. Elizabeth Kavaler of NY Urological Associates, and colleagues, and by graduate and post graduate students of statistics and nursing at two major universities. Results will be posted on the site as soon as we have finished this analysis and published it. |
| Meanwhile, if you need to know what other patients have to say about the effect of urological procedures, because your doctor has recommended one of them, please feel free to call me at 845-727-1957 or e-mail me at zakariasen@verizon.net. |
Contributions: In June of 2006 we changed the home page of www.cystitispatientsurvey.com to include a request for donations, via Paypal. I have closed the Paypal account because there have been no contributions. Please see the "contributions" button on our menu for a verifying statement from Paypal. |
| I have been supporting the survey financially by myself, in order to be independent of pharmaceutical and other medical interests which might be perceived to influence the outcome of the survey. Many volunteers have contributed their time and expertise to the survey: Dr. Kavaler has given me invaluable advice and helped me to respect my own instincts. Professor Yelena Aronson, a cystitis patient, designed the survey site, and her husband, Mikhail Markov, did the programming – these are ongoing. Steve Davis, whose company is called Net Vantage, helped us to organize data, export it to Excel and to send it to the analysts. He has also helped me with the technical questions that put me over the edge. Many friends have helped with editing and other advice. My family has tolerated a great deal of messy paperwork and provided encouragement and support every day. Finally, you, the patients, who are always in pain, have spent the time and energy to fill out a 20 page survey. When I read your surveys, I feel very close to all of you; your ingenuity and courage are phenomenal. We will get your answers on the web as soon as possible. Your interest has kept us all going. Bless you, all of you. |
| I still need financial help with this, and especially, right now, would like to hire a company to put the survey near the top of the ist of sites that come up when patients type in "interstitial cystitis,'" or related terms. WWW.CYSTITISPATIENTSURVEY.COM is many pages down the list - actually I have not found it without using the full address or a link from the other cystitis sites who have provided that. |
If anyone knows of a company that would do this for us, at a non-profit rate, and/or you can contribute funds to this end, please let me know: zakariasen@verizon.net, or 845-727-1957 |
Copyright © 2004-2006 CystitisPatientSurvey. All rights reserved. |
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