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June 25, 2010

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June 25, 2010

After suffering from paruresis for my entire cognitive life (over 30 years!!) and more importantly, at the brink of failing a UA random test for employment due to 'not producing a sample' I started doing some research online and stumbled into the IPA website. I spent the better part of a day reviewing the information they had on thier website. I followed thier advice and went to an urologist who 'diagnosed' me with paruresis and wrote a nice letter explaining this to my HR department. I also wrote a cover letter for them as outlined by the IPA information. To make a long story short it was succesful and they have since found other means to establish I am not using illegal substances. The days of sweating bullets over the stupid UA's was over. I immediately went back to the IPA's website and made a donation. The inforation and research they do is invaluable to people like me that have this pauresis condition. Although I have not attended any of thier workshopd, I have read the archives and have used many of thier techniques succesfully. The IPA is doing great work and I commend them for all thier time and involvment. Thank you IPA!!!

The Great!

I've personally experienced the results of this organization in...

Yes.....as I mentioned in the review portion; they have helped me greatly. The quality of my life has improved immensely.

More feedback...

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

June 25, 2010

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June 25, 2010

This organization changed my life. Before I attended the workshops, I had trouble urinating in public bathrooms and even in my own house if other people were anywhere nearby. I hid this problem from everyone, was depressed and had a very low self esteem. After the first workshop, it was as if a huge load had been lifted from me and I felt great. Now several years later,after another workshop and a lot of desensitizing practice, while my paruresis is not 100% gone, it is much better. More importantly, it no longer effects my self esteem and I don't feel that it is ruining my life. Tell your story here and help others understand this charity

The Great!

I've personally experienced the results of this organization in...

improved physical and psychological health

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How frequently have you been involved with the organization?

About once a year

When was your last experience with this nonprofit?

2008

June 25, 2010

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June 25, 2010

Like all other paruretics I imagined I was the only person who had this strange problem -- an inability to urinate when other people were around and who could see or hear me. Thanks to the internet I was shocked and excited to discover the IPA and to learn that there were others who suffered as I did, from the pain of an overfull bladder and from the shame of being unable to do what others can do without thinking. I learned from the IPA website about local groups of people who get together for desensitization practice, and despite the intense anxiety I had about doing anything so intensely embarrassing, my motivation to conquer the problem got me to the first meeting -- and the thrill of making progress that first day was wonderful. I continued with the desensitization practice and took a workshop with Steve Soifer which really furthered my progress. One unforgettable day after desens practice we walked into a crowded bus station bathroom and I walked up to a urinal and urinated without the slightest hesitation. Just the thought of being able to do something previously so unthinkable is heady. But these meetings took up a substantial portion of my weekend and unfortunately didn't translate into better functioning when I wasn't with a group of other desens people. Eventually I gave up the desens meetings but have remained a member of the IPA in the 9 years since that first get-together, hoping that the organization, with my small financial assistance, can make progress in discovering the psychological mechanism that is involved, and a means to find lasting help for those of us who have, in some mysterious way, developed paruresis.

The Great!

I've personally experienced the results of this organization in...

discovering that paruresis is a phobic kind of thing that can be overcome with desensitization (though the time and constant stress and anxiety took such a toll with no lasting results that I eventually decided to discontinue the desens work).

Ways to make it better...

If I had to make changes to this organization, I would...

just let Steve and the others working in IPA know that I -- we -- deeply appreciate the work they're doing to promote overcoming paruresis in the many ways that IPA works to do so.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

learning that I am not alone in having paruresis, overcoming the shame involved, and learning that it is a phobia that can be overcome through desensitization (at least on a limited basis).

The kinds of staff and volunteers that I met were...

(Steve Soifer) generous and helpful to a fault.

If this organization had 10 million bucks, it could...

sponsor the research that could discover the mechanisms involved in parureses, and to promote knowledge of the problem and acceptance of it as a problem many people struggle with.

Ways to make it better...

desensitization was more lastingly helpful, but its limitations are just the nature of the beast.

In my opinion, the biggest challenges facing this organization are...

getting the funding to promote its object -- sponsor research, publicise the problem, help paruretics all over the world.

One thing I'd also say is that...

the world's a better place for me thanks to the IPA.

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2007

June 25, 2010

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June 25, 2010

Dr Soifer and his dedicated group of professionals, people with paruresis and theirsupporters have spearheaded an amazing international effort, selflessly building the organization with countless unpaid hours of work. In a few short years they have reached many thousands of people who had previously suffered alone and in shame from a treatable and surprisingly common ailment. They have had drug enforcement laws changed, advocated for bathroom re-design, supported efforts at improving biological and psychological treatments and worked non-stop at getting the word out into the general public. They have provided direct care to patients around the world. ALl this has been done on a shoestring , with virtually no paid staff, no money and a lot of volunteer help.

The Great!

I've personally experienced the results of this organization in...

listening to lives changed by informtion and treatment

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How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2008

June 25, 2010

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June 25, 2010

This organization is affiliated with the IPA (International Parurisis Association) which helps individuals with Parurusis (Shy Bladder Syndrome). Although to many people who do not suffer from this condition (which affects daily life, multiple times everyday) it may seem ridiculous, for many of us who battle it, this organization has changed our lives. The SBI organizes monthly workshops throughout the world and support groups for continued therapy. I have been fortunate to attend workshops in Detroit, MI over the last ten years. I have also benefited from a strong support group that continues to achieve great things for this cause. I can honestly say that I don't know where I would be today, without the IPA. See this current article from the Detroit Free Press (appeared in print as well) for a better understanding of the Shy Bladder Institute, the IPA, and its members. http://m.freep.com/news.jsp?key=640733&rc=fe

The Great!

I've personally experienced the results of this organization in...

My daily life. I can now travel more freely, go out with friends to social events, and spend more quality time with my family without the continued worry of whether I'll be able to use a restroom away from my home.

Ways to make it better...

If I had to make changes to this organization, I would...

Give it proper funding so it could perform clinical research that is needed to find real, long-term cures for the millions of people who suffer from this debilitating condition.

More feedback...

What I've enjoyed the most about my experience with this nonprofit is...

Meeting great people

The kinds of staff and volunteers that I met were...

Caring and knowledgeable

If this organization had 10 million bucks, it could...

Do the research needed to move towards a permanent cure and raise the awareness needed to diminish the stigma that syndrome can cause.

Ways to make it better...

We could expand our exposure work to other places like planes.

In my opinion, the biggest challenges facing this organization are...

Funding. There is so much research, awareness, and legal concerns that only dollars or extremely connected individuals/companies can overcome.

One thing I'd also say is that...

Thank you SBI and IPA for all your efforts!

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

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