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August 15, 2014

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August 15, 2014

I am 63 years old and cannot remember a time when I was comfortable using public restrooms. (I have no memory of what the boys' rooms looked like when I was in either of the two elementary schools I attended.) Throughout my school years, I would "hold it" for the entire day--with the exception of a time or two when it got the best of me and I was sent home with wet pants. On family vacations, I could go six hours in the car without urinating. Life in a dormitory my freshman year in college was agony at times. I'm surprised that I did not do permanent damage to myself while on choir tours that involved travel for an entire day. Despite my paruresis (significant that a red underline indicates spellcheck doesn't recognize that word), I have determined that I am not sitting at home. I have traveled over the years to Europe, Israel, Africa, and South America, never knowing what I might encounter in terms of public restrooms (and it's best that I didn't know--some were real winners!). I stumbled upon IPA about the same time I was beginning to use the Internet. A pending trip to Africa had me particularly concerned, so I contacted Dr. Soifer. (Using aircraft rest rooms has been an issue--especially when there is a line of folks waiting.) This was 14 years ago, and that contact alone gave me confidence--especially given the awareness that I was not alone (or a freak). While I have not attended a workshop, I still may one day. For now, I have good days and bad days--urinal days and stall days (if conditions are anxiety-producing). Probably the best part of my connection with IPA (I support the organization annually) is my growing willingness to share my situation with others, particularly those who suffer from other social phobias or who have loved ones who do. Were it not for Steven Soifer and IPA, none of this would be possible.

Ways to make it better...

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

Expand the support base in order to expand the outstanding work that they do.

More feedback...

Was your donation impactful?

Likely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2014

November 13, 2013

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November 13, 2013

This organization changed my life. I suffered from paruresis since I was a kid, and thought I was the only one who had it and was doomed to living a severely limited life because of it. Then about 15 years ago I went to an IPA workshop and started reading the IPA message boards and it changed everything. I can honestly say that now my condition no longer limits my life in any way. Steve who runs the organization has been there from the beginning and him & the organization are devoted to making people's lives better. And they really do. I couldn't recommend an organization to donate to more highly.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2013

August 20, 2012

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August 20, 2012

I've suffered with Paruresis since college and it rules my life. It conditions my leisure, my work - anything outside of my home. I stumbled upon the IPA webpage about 6 years ago and I literally cried. I wasn't alone. Not only that, those with this affliction shared their experiences. The IPA has many resources to deal with Paruresis as well as a support lifeline. I proudly support their work.

More feedback...

Was your donation impactful?

Likely

How likely is it that you would recommend that a friend donate to this group?

Likely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

August 19, 2012

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August 19, 2012

I met Dr. Soifer in early 2000 because we were planning a trip to Europe. I had many fears about the facilities in Europe. I did go to Europe (Germany and Switzerland) and was able to go in the floor to ceiling stalls. Since that time I have gone to several workshops and practice sessions. I have made amazing progress. I want to thank Dr. Soifer and all the other friends for their help and support. I now live in an area that does not have any practice groups. I an no longer bound by my paruresis.

More feedback...

Was your donation impactful?

Unsure

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Likely

When was your last experience with this nonprofit?

2011

February 17, 2011

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1 previous review
June 28, 2010

I have been dealing with the effects of Shy Bladder Syndrome for the past 55 years. I've become a mostly stay at home person, venturing out only to places which make me feel safe and provide private b... more

February 17, 2011

Most of my life beyond age 8 or so has been spent avoiding going out unless I was sure there would be a bathroom to use that was quiet and very, very private.
As a teacher for 38 years, I was bound by the length of classes and learned to restrict my intake of liquids to prevent having to use a
restroom at a specific time, knowing the time I had was very short.
Living with shy bladder syndrome, paruresis as it is medically termed, produced much anxiety and sadness. I wanted to go places and see the world, but couldn't.
About 10 or so years ago, I discovered the International Paruresis Association and upon investigating it, found that there were many others like myself, looking for a way to cope and solve a life restricting problem.
The information was straightforward, factual and accompanied by people you could call for help. This gave me HOPE!!. Until finding them, I wasn't too keen on anything.
I used my job and its demands as a shield to cover my real thoughts; having the IPA to use let me keep in touch with new research and new ideas that could lead to not needing to worry about my problem.
This organization gave me the hope and courage to learn how to self catheterize if I needed to and for that I am very grateful.
Who can say where I would be today without their help!

The Great!

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

keeping up with the research and contributing ideas for a solution to a scientific phone conference diagramming the problem and its possible solution.

Ways to make it better...

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

seek acceptance by the medical community that this is a serious problem that needs their attention and research. It is not something to be ignored; it will not just go away.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

What specific problem, purpose, priority, or project prompted your gift?

Their priority is to eliminate the problem of shy bladder syndrome.

Why did you make your donation at this time?

The economy is not strong; hence donations are down and the ability of the organization to continue and help seek a solution would be diminished.

What would you tell others about this organization?

They actively seek a solution and provide you with help if you need it. They fight ignorance at all levels when ever it's found.

When was your last experience with this nonprofit?

2010

June 28, 2010

I have been dealing with the effects of Shy Bladder Syndrome for the past 55 years. I've become a mostly stay at home person, venturing out only to places which make me feel safe and provide private bathroom facilities. Until I found out about this organization, I had little hope of overcoming it, but hope now is strong. Through their efforts at providing literature and setting up workshops, I feel a sympathetic ear is available and I will be dealing with others who understand my plight. About 9 years ago, I came upon a list of therapists and others who had been successful treating this syndrome; I worked with two for a while and am working with one still. I am able to keep up my hope with my therapy and used it this past March to contribute to a symposium on the causes and possible solutions to the problem. I downloaded the transcript of a telephone conference between scientists and doctors, which discussed the physiological and psychological causes and possible areas for future consideration. I read it and wrote my understanding of the topic from a patient's point of view. I submitted it to the organization for inclusion to the study of paruresis or shy bladder syndrome. Without this organization, I would still be wondering how I could cope with my affliction and whether there were others like me in the world.

The Great!

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

finding out about shy bladder syndrome and those who can help cope with it and overcome it; then seeking out professionals and receiving help.

Ways to make it better...

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

seek the help of medical schools throughout the world in order to better understand the syndrome and possibly find a procedure which works most often or cures it.

More feedback...

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

the knowledge there is a group working to help people like me overcome a significant life changing problem.

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

cordial and professional; they were striving to create something out of nothing.

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

set up more workshops and enlist the aide of in depth research from Universities and medical facilities

Ways to make it better...

I could have found the time and courage to attend a workshop or participate in a scheduled experiment as a volunteer patient.

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

the medical community, which doesn't yet take shy bladder seriously as a debilitating affliction; many doctors in the field of urology are very unaware of the problems caused by shy bladder syndrome and do not recognize the medical term for it-paruresis.

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

I believe a cure will come about, mostly due to the efforts of the Shy Bladder Institute and other groups which spring from it.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010

February 10, 2011

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February 10, 2011

After revieling my problem with my girlfriend. She found the IPA for me and I attended the Chicago workshop. It helped to have that link to others in the same situation.

The Great!

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

They have given me ways to convey to others who do not know what paruesis is. This helps me as well because I''m not trying to hide it.

Ways to make it better...

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

I feel they are doing an excellent job!

February 6, 2011

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February 6, 2011

This is a very important organization that has helped me come to grips with a syndrome i have faced since childhood. I always thought of myself as isolated, fighting this situation all by myself, without any support group to speak of. It was only when i started researching on the internet, after i had gone through middle school, highschool, and college, did I realize i was not alone, and that there was help.

Through Dr. Soifer's concerted effort he has helped countless people such as myself come together, step out of anonymity to discuss collectively and thereby begin the first steps of overcoming this issue. It is because of his organization and the ipatalk message board that I was able to attend a workshop spearheaded by the late Chris Mccullough, and begin to slowly realize the power of graduated exposure therapy and cognitive behavior in recovery.

This association, with its pamphlets, books (shy bladder , free to pee) have been instrumental in leading me out of my mind and into a life interspersed with social gatherings and activities, something unheard of just six years ago. I have not gotten over shy bladder, and it remains to be seen if one can truly be "cured" of it, however, through this association i have learned to realize that i am not alone, that there are countless thousands who are fighting this crusade alongside me.

This nonprofit serves a marginalized portion of the community, one that has for too long had to live with the shame and social stigma associated with this condition. It helps empower and educate, and through its efforts on the new media front serves to improve workplace environments for sufferers. It has been crucial in leading efforts for alternative drug testing, exposing workplace discrimination for those who are disabled by this condition, and giving a voice to the estimated 7% of the general US populace (and who knows what % of the world populace) who have for years suffered silently

This is a worthy non profit that lives up to its mission statement; The only thing preventing it from scaling to even greater heights capable of larger impacts is funding - funding to spread the message to the powerbrokers in congress to help provide full and equal protection under the american disabilities act for employees to preclude them from being unjustly fired for failing to produce a drug testing sample due to the archaic, conventional method of urinalysis (a methodology especially ingrained in the D.O.T) - funding for scientific research into curing this condition - funding to help bring this issue out in the open to serve as a conduit for discussion in every household across the world without shame.

The Great!

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

My own personal experience in dealing with shy bladder.

Ways to make it better...

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

Provide even more funding to help a) spearhead medical research into the cause and solution for this condition. b) bring it to lawmakers' attention to help alter current drug testing laws to make it nondiscrimatory towards those afflicted by SBS c) educate through the power of social media /marketing (SEM) to bring more people out of the veil of anonymity, to learn that they need not suffer alone, that there is hope..that there is help.

February 5, 2011

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February 5, 2011

Valuable source of treatment options, information on research in the field, and advocacy for those impacted by the condition. If nothing else, the Association has raised awareness of the significant numbers of people dealing with this affliction and how it affects their lives. The Association has achieved quite a lot on a very modest budget.

The Great!

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

Understanding the extent to which this condition impacts lives. Allowed use of blood tests in lieu of urine tests in my organization. Considered the condition in workplace bathroom design.

Ways to make it better...

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

Nothing comes to mind at this time

February 5, 2011

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February 5, 2011

I attended a workshop several years ago and the support I received was very encouraging. Up until that point I thought I was alone. IPA continues to fight for important issues affecting those with paruresis, such as alternative drug testing methods.

The Great!

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

my personal life. It's nice to have a name for my condition and to know there are others out there facing the same thing I am day in and day out.

Ways to make it better...

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

allow the founder to work full time for the organization (this takes money however).

February 5, 2011

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February 5, 2011

This organization has done amazing things not only working with those of us with shy bladder, but also advocating for changes in drug testing in the work place and defending those whose jobs were unjustly terminated because they couldn't provide urine for a drug test. Every year they offer workshops to help get people with shy bladder introduced to graduated desensitization and on the path to addressing this issue. They also provide a directory of the various support groups around the world where people can connect and work together on the issue.

The Great!

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

Several years ago I attended a workshop and learned the basics of graduated desensitization and began working on addressing my own bashful bladder. It also connected me with other folks in my area that are working on the issue allowing us to meet regularly and to continue the work we had begun in the workshop.

Ways to make it better...

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

If I had to make changes to this organization, I would give them more money so that they could continue to expand the scope of the great work that they do.

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