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Review for International Paruresis Association, Inc., Catonsville, MD, USA

Rating: 5 stars  

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!

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.

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.

Was your donation impactful?


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


How likely are you to donate to this group again?


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?


Role:  Donor & I used the hope I gained to seek medical help and use a learned procedure to relieve my anxiety.

Review for International Paruresis Association, Inc., Catonsville, MD, USA

Rating: 5 stars  

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.

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.

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.

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?


Role:  Donor & Gave money and wrote a paper to compare and contrast results of a scientific telephone conference, which I submitted for consideration.