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Author Topic: Awareness of Peyronies Disease Vs. the Patient's Desire for Anonymity  (Read 17022 times)

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Hawk

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This topic is to discuss the Peyronies Disease patient’s reluctance to discuss their disease or even admit they have Peyronies Disease, and the impact this has on advancing the battle for Peyronies Disease awareness, funding, and treatment.
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Hawk - Updated 10/27/18 - Peyronies Society Forums

Larry H

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #1 on: October 05, 2005, 09:32:27 AM »

This is a very important topic as it goes to the heart of the lack of advancement in understanding the true nature of Peyronie's, the actual number of men with the disease, and the reason that research and development of new treatments has advanced so little in several hundred years.

Time does not allow me to get into an in-depth discussion of this topic now, but I will do so shortly. I ask all of you to give this topic some thought and post comments and questions.

Larry H
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Barry

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #2 on: October 05, 2005, 09:02:43 PM »

Guys,
This is likely one of the most important topics that will appear on any forum. The silence is damaging to our future. I have discussed this issue with Hawk and Larry H in great detail. In fact, this will be a topic on the PDC forum as well.

If we don't start to come out of the closet we are not going to advance in any action that we pursue at greater then a snails pace. I remember when the gay community came out,they caught hell but look at them now, they openly speak of their alternate lifestyles and don't apologize for it. If Peyronies Disease sufferers don't follow their lead we will suffer greatly in our silence.

Just a thought guys.

Best,
Barry

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SteveW

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #3 on: October 06, 2005, 07:39:32 PM »

Or is the real problem, the small number of men who are actually afflicted?  None of the drug companies are going to invest in research and development to find a drug treatment that potentially, could only be sold to about 2-5% of the male population.  I think it's more about money, than "annonimity."  BUT, I completely agree that until we stop hiding and being ashamed of a problem with our dicks...nothing is going to change.  Men are loathe to admit they aren't hyper-masculine-sexed up and well hung. 
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dcaptain

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #4 on: October 06, 2005, 08:46:36 PM »

Isn't part of the problem (the Catch-22, if you will) that telling people sort of creates this odd dynamic.  OF COURSE people who come to understand what Peyronies Disease is about are going to feel sympathetic and want to help, but there really isn't much they can do.  I've completely told NO ONE about my case, just because it seems like I'd be giving people a burden.  What good will come of it?  I was really close to telling my dad once, but I've come to the decision that I don't want him feeling sorry for me all the time.  Especially since it might not be required!

Similarly, I think that's why a lot of us don't speak up - besides the fact that that it involves our youknowwhats, it also is a total bugger of something to get.  And we don't want to feel like we are disabled in anyway.  Especially since modern medicine currently doesn't have any answers.  Damned if you do, damned if you don't.  It does seem though as if even if 5% of guys out there have or get Peyronies Disease, that might be big enough for a drug company to take interest.  Granted, I'm just guessing, but...

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j

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #5 on: October 06, 2005, 11:07:54 PM »

I agree with dcaptain, burdening other people with the knowledge of this thing is not going to benefit me.   Just my personal outlook - others may see it differently.
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j

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #6 on: October 06, 2005, 11:25:11 PM »

I just took a look at the list of forum members and I was really impressed. A whole lot of guys, all taking part in a more-or-less sane discussion  on Peyronies Disease - for the first time ever.  I was also struck by the number of guys who read without posting. Nothing wrong with that - there's no obligation to post, ever. But I say, do it. Post something, even if it's just a heartfelt "this sucks." Because you'll feel better.

All of us with Peyronies Disease know how it shuts you down psychologically and emotionally. You become a zombie. There's an invisible wall between you and the rest of the world - maybe between you and the life you once had. But you might be surprised how saying something about it, anything, even on an anonymous internet forum like this, can help, a little. You'll feel just a bit more human and alive. Try it - vent some opinions about bloodless MDs who give you the 10-minute blow-off, or drug companies sitting on patents that could change people's lives, or just the maddening situation of having a critical, absolutely intractable problem that's totally invisible to the people around you. 

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SteveW

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #7 on: October 07, 2005, 12:54:30 AM »

I may post too much, too often and you all probably get tired of my musings and diary....but as has been described, it is good for me and most importantly, maybe helpful to someone else.  I hope the men here will indulge my ramblings.  It is just comforting and reassuring to know that I am not alone in the world and other men have and are experiencing the condition much the same as myself.  Thank you all.
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Hawk

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Re: SteveW
« Reply #8 on: October 07, 2005, 08:41:57 AM »

I may post too much, too often and you all probably get tired of my musings and diary.... It is just comforting and reassuring to know that I am not alone in the world and other men have and are experiencing the condition much the same as myself.  Thank you all.

Steve,  Your posts are contributions.  They are not endured and not a distraction.  They are in fact the very reason we busted out butts to make a forum.  As  very clearly stated, we need more members to step up and even speak out here.  It helps us and will help them.  It can be a one liner.

Thanks to both of you.

Hawk
PS: j is correct, it is impressive.  We have had 63 posts and 18 new members in the last 3 days.  All on Peyronies Disease, without immature rantings.  By comparison to what we had before this forum, it is astounding.  I smile as I remember all the people that said it would never work.  Our members have blazed a new trail with this forum.
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Hawk - Updated 10/27/18 - Peyronies Society Forums

Larry H

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #9 on: October 07, 2005, 10:27:18 AM »

Guys,

It's good to see your posts on this subject, and I hope they continue. I want to start with a quote from Dr. Tom Lue.

"urologists are left with no research funding, no institutional support, and no patient advocates in helping the fight against the disease. Neverless, armed with our scientific curiosity, innovative minds and sincerity to serve our patients...we will eventually prevail."

The key from that quote that applies to this discussion is "NO PATIENT ADVOCATES". Dr. Lue knows as do all the other urologists involved in Peyronies Disease research that patient advocacy is paramount in advancing Peyronies Disease research and understanding. They also know that the prevalence of Peyronies Disease is greatly underestimated and that strong patient advocacy is needed to counter this fact. I know that because I've heard it first hand from one of the top doctors.

Someone stated that the prevalance of Peyronies Disease was between 2% and 5%. 2% would be 2,800,000 men in the US alone. However, there is a well reported study of 100 men with no known Peyronies Disease that found 22 had fibrotic lesions of the tunica. As I said in an earlier post, a good case can be made for placing the number of men in the US with Peyronies Disease at around 10%. If the true number of men with Peyronies Disease were known, I believe the pharma community would be into Peyronies Disease research in a heart beat. However, the true numbers are not known and the disease remains thought of as rare, and at the bottom of orphan disease status.

So the problem remains is as it has been, the majority of men who suffer with Peyronies Disease want to keep this very devistating personal disease private. As I said in an earlier post, I understand the reasons and there are many very good reasons. I'm not trying to twist the arm of anyone who desires to keep their condition private, as it would be wrong to do so because it goes to the very devastating mental side of the disease. However, if some of you are say borderline on this issue then I say be more open, become an advocate, advancement is in the numbers.

I think it was "j" who made a very good observation about the quality of posts on this forum, but also the number of members who do not post. Many more read than post, and I can only hope that in some small way this discussion topic will result in more openness and an increase in patient advocacy.

There is another side of this in which even those who wish to keep their condition private can make an enormous contribution. Become advocates with your urologist, and challenge them to better understand this disease. I would bet that 90% of urologists view Peyronies Disease as an irritant, and don't have a clue as to the true devastating nature of Peyronie's. We all have read the posts, husbands that withdraw from their wives , wives that leave their husbands, the break up of families, extra martial affairs, depression, even some who talk of suicide. Urologists need to understand the mental side of the disease, and I don't believe most do. How each of us goes about broaching this issue with our urologist depends on our uro and our our relationship with him/her. It certainly wouldn't hurt to encourage them to read this forum, or the PDC website.

Let me close by saying that I hope this discussion continues. I believe it's an important issue that goes to very core of the problem of limited funding and research to advance Peyronies Disease treatments and understanding.

My Best,

Larry H
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dcaptain

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #10 on: October 07, 2005, 03:34:03 PM »

This is an enormously important and great discussion, and it's really awesome to know that we can have it without any sort of the obnoxiouness that certain other unnamed forums  ;) were plagued with.  Major thanks go to everyone here and to everyone who put this forum together.   You guys rock.

I just want to make one distinction on my former point and one additional comment for what it's worth.  First, when I say that I feel as though I might burden the people in my life by telling them, I should say that that's my personal feeling in my situation.  I don't think in every situation it's a burden, and I don't want anyone thinking that I'm saying telling anyone else would necessarily be so.  As with everything, I would think it's always unique to what's going on in one's own life, and it's important to have people in your life who can help you cope. 

Secondly, while I haven't and probably won't tell my family, that doesn't mean I wouldn't tell the medical community or the government for advocacy purposes.  I have no problem in that regard, whatsoever. 

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Larry H

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #11 on: October 07, 2005, 04:47:13 PM »

dcaptain,

Great post, and I'm delighted to hear of your attitude concerning the medical community and other involved agencys.

As a side to this discussion there is something I thought of mentioning a couple of times before but never did because it involves another person. However, it is important so I'll try to be discreet.

My wife and I have two married sons. Both of my sons and their wives know of my condition, and they know of my activity in Peyronies Disease support. I also have a brother who knows of the condition, and his daughter is married to a Phd. working at NIH who sends me Peyronie's data from time to time.

The point of all this is that a few days ago I got a call from a close family member to tell me he just noticed a slight bend that he did not have in the past, and asked my advice. There is no need for more detail except to say he is now set up to see a urologist. I pray it's not Peyronies Disease, but if it is his knowledge of my condition is getting him to a urologist at the very beginning of the onset of the disease, and as we know that is important.

It's just a side benefit to this topic that I had never considered until I received his call.

Larry H
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Old Man

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #12 on: October 07, 2005, 07:36:53 PM »

Larry H:

Outstanding post below. Before I was diagnosed with prostate cancer, I had to use the stalls in a public restroom. Absolutely could not urinate in front of anyone. The stream just would not start. After the surgery and a bit of counseling from my doctor (uro) (he told me that from his experience in the urology field, that I had nothing to be ashamed of when it came to size), I can openly use any restroom without fear, etc.  I guess size and looks was what I was psyched up about, huh? That problem is solved and it remains no more.

Now, the point is, all of us should be aggressive in our approach to telling the whole male world about the traumatic disorder/disease called Peyronies Disease. I belong to the local chapter of the US TOO cancer support group in Mobile, AL. We make it a point of including Peyronies Disease awareness at each and every monthly meeting. We were totally surprised as to the number in our group that "came out of the closet" about Peyronies Disease when they learned that I had it as well as the leader of our group. Now it is an open subject all the time. Everyone should overcome any bad feelings about the stuff and once it is made "public"  they usually have a different outlook on the subject.

Just wish that I could tell the entire male population in the whole world about the mess and what to do and not to do when it comes to taking care of one's most prized bodily possession!

Old Man
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Hawk

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Re: Old Man
« Reply #13 on: October 07, 2005, 07:58:37 PM »

Old Man,

Thanks for that post because it gave me an idea I am willing to try.  While I am hesitant to discuss this with family, I also belong to the same organization in my area and I will make it a point to bring it up.  I have discussed injections for Erectile Dysfunction with men and their wives.  That is another thing I now need to warn them about.  Interestingly enough, we are one of the few local chapters that have wives attend the meetings.  Due to my schedule I have not been in 2 months but it was suggested that we at least split up for a portion of the meetings.  I don't know if they started that.

One way or the other, if they don't want to hear it, they can hold their hands over their ears.
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Hawk - Updated 10/27/18 - Peyronies Society Forums

Old Man

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #14 on: October 07, 2005, 10:52:29 PM »

Hawk:
Most of our wives attend the US TOO meeetings also. However, in our case they want to hear everything. In fact, we have some wives that bring up the subject and want to learn more about it.

At one of our meetings earlier this year, we had a regional sales representative of one of the popular brands of medical quality VEDs present a good informational discussion about Erectile Dysfunction, Peyronies Disease and related men's health problems. A goodly number of wives present asked more questions than their husbands did.

I personally believe that there are more wives and/or partners out there that want to help their mates more if the mates would allow them in on the problems. Keeping things like Erectile Dysfunction, Peyronies Disease and other men's health issues secret usually results in divorce, separations and in general bad relations, etc.

We men need to open up more and bring out the issues to the forefront. Then we would see better conditions existing between us and our partners in life.

The above is just my personal observations during the past 42 years of married life in which Peyronies Disease has played a serious role.

Old Man
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Larry H

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #15 on: October 08, 2005, 12:01:40 PM »

Old Man,

To say that I'm delighted with your post is an understatement. Your support to encourage Peyronies Disease patients to be more open with their condition is an enormous asset.

I was really impressed with your story about how many opened up in your US TOO group after the subject of Peyronies Disease was raised. This certainly adds weight to the belief that there are far more who suffer with Peyronies Disease than published stats indicate.

I hope things are back to normal for you and the family after Katrina. What a horrible mess just south of you on the Mississippi coast, just total devastation.

Hawk:

Great idea to bring Peyronies Disease discussion to your support group. These are the type of things others can consider who really don't want to be open with Peyronies Disease in a public setting.

Larry
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Old Man

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #16 on: October 08, 2005, 09:40:17 PM »

Larry H:

Thanks for your concern about us during and after Hurricane Katrina. No, we did not suffer any damge to speak of and that is a blessing. Compared to others just south of in the coastal of Bayou Labatre, AL we faired well. That little coastal fishing community was virtually wiped out. FEMA still has not helped the citizens there very much. They need homes, jobs and businesses to return to work, etc. When the Federal help will come, nobody seems to know.

Yes, our US TOO group is embarked on a mission to tell the world around us about Peyronies Disease and Erectile Dysfunction in addition of our main mission statement which is to help others with prostate cancer. The three all go hand in glove when it comes to a man's personal situation. Prostate cancer is bad enough, but when Peyronies Disease strikes after that and Erectile Dysfunction compounds the issue, we had a problem!

I am currently emailing with a young fellow who thinks he has Peyronies Disease as a result of bad masturbation session when he was 13! Imagine that, 13, now 24 and never married due to the fact he is deeply concerned about his inability to perform. He is getting my best attention to say the least.

Just keep up the good work that you are doing also. We all need to put our best effort forward to help others with this crazy mess.

Regards, Old Man
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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #17 on: October 09, 2005, 12:23:57 AM »

Hello all,
First time posting, and I wish to thank the originators of this site for the wonderful information that it gives.
I've had Peyronies Disease for a couple of years now, and withdrew from treatments after getting my first jab with the needle.
It all began one morning when I noticed a bend to the left, which has since become an upward curve. Now, after reading all of the attempted remedies, I'm at least going to give one of them a go.
Suffice to say that you may think I'm in the wrong thread, but the purpose of this post was to suggest that besides telling one's urologist to check this site, (if everyone did this it would probably double the number of visitors), why not send some info to the editor of your local newspaper anonymously.
This may prove fruitless because of the nature of the problem, but one or two could possibly get caught up with the newsworthinesss of the issue and maybe do an article.
I live in Toronto, and certainly will try with the four major newspapers here. What have I got to lose?
Again, a pleasure to have found you guys. Keep up the good work.
Podman
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Joshua

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #18 on: October 09, 2005, 10:43:29 AM »

Podman:
Welcome! Thanks for the ideas. I would love to get some members of the medical community involved with the forum.
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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #19 on: October 09, 2005, 11:33:36 AM »

You can be sure that some MDs will be, or are,  reading this forum. And that will have real impact as time goes by.

One thing about this forum is that it's sort of second-generation. The posters here haven't, for the most part, been revisiting the whole history of transdermal verapamil, vitamin E, Colchicine, ALC, fibrolytic enzymes and the rest.  The current discussion is now about surgery and verapamil injections. That in itself might be an eye-opener to MDs still prescribing things that most posters here feel have been ineffective.

Despite what we seem to assume, there is actually no reason why an MD can't post here. The BSTC Dupuytren's forum is still active and useful and there's a knowledgeable surgeon in California who posts occasionally and is very informative. The barrier to this sort of communication by MDs is mostly just custom and tradition, plus lack of interest.

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Hawk

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #20 on: October 09, 2005, 04:32:03 PM »

I have been considering printing up some business cards on the laser printer with something like:

Peronie's Disease Patient Discussion Forum
http://www.PeyroniesForum.net

By Patients for Patients

Support, Education, Confidentiality


and dropping them off at local urologists offices
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Hawk - Updated 10/27/18 - Peyronies Society Forums

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #21 on: October 09, 2005, 05:54:10 PM »

Hawk:

Great idea! We do that with our local US TOO chapter. Only, we state help with prostate cancer.

We will entertain the idea of adding Peyronies Disease to our information cards and flyers too. Thanks for the idea.

Old Man
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Age 90. Peyronies Disease at age 24, Peyronies Disease after radical prostatectomy in 1995. Heart surgery 2004 with three bypasses/three stents. Three stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries in the last 10 years.

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #22 on: October 09, 2005, 06:38:14 PM »

Hawk,

I agree with Old Man, it's a wonderful idea. I wonder if others would like to do the same, I will with mine.

Larry H
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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #23 on: October 09, 2005, 07:49:00 PM »

Thanks for the support on the business card idea. I agree it is a positive step but I don't want to sidetrack a topic that is here solely because of Larry's initiative in perusing it.  Some of the ideas expressed are good at getting more people in touch with the support forum.  While this step could be a bit helpful with being more public (it at least informs the patients and brings them into the discussion), it is but a tiny step.

I am blunt to a fault.  I find as I get older that I make less time for nuance and subtle approaches.  

When Larry first got into this conversation elsewhere on this forum I thought the concept was a bit nuts.  I envisioned sitting in my usual spot at the table with my son and daughter-in-law visiting.  I would ask her to pass the mashed potatoes and nonchalantly say, "oh, by the way, did you know that eating healthy, along with a few other measures, has reduced the curvature in my penis by 5 degrees."  :-\

While that conversation is never happening at my house, I realize that there are things I would do.  I would write to a congressional representative.  I would bring the issue up in a support group setting such as a prostate cancer support group that discusses other sensitive issues. I would bring it up to urologists.  I can even see bringing it up to male members and some females in my immediate and extended family.  If I did, it would be by generally alluding to the condition without getting into the specifics of my situation that I share on the forum.  Some are willing to go further, some not quite that far, but I am willing to bet that there are things we would all feel comfortable doing that we have just not thought about.

For that I am indebted to Larry for pushing the subject a bit more, rather than just letting it get brushed aside.

I am not sure if Larry sees the discussion on how public awareness impacts funding as part of this topic, or best covered under an additional topic.  I am open minded on this point but I remain unconvinced.  I think drug companies will chase a dollar anywhere it leads.  Peyronies Disease patients will pay dearly for something that demonstrates a significant improvement regardless of public education.

So these are my questions:

First, can it be established that lack of public awareness restricts research.  If the answer to that can be demonstrated to be a yes, then the answer to the second question becomes more meaningful.  The second question is:

what things are we reasonably willing to do to increase public awareness.

No dout there may be many other questions like, why aren't we willing to do more, etc.

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Hawk - Updated 10/27/18 - Peyronies Society Forums

Larry H

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #24 on: October 10, 2005, 09:33:01 AM »

Hawk,

I started to type a reply to your questions this morning, but as I got into it I stopped. The question of "Public Awareness" is of immense importance and covers a huge area of subjects. I want to take the time to develop a proper response to the first question that will be clear, concise, and to the point without it becoming novel length in size. Then, if I've done a reasonable job in establishing why the lack of public awareness restricts research, let others address your second question.

I will work on this response and post it as soon as possible.

Larry
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j

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #25 on: October 10, 2005, 05:02:16 PM »

I hate to be throwing cold water on what seems like a good idea, but I doubt that in today's litigation-crazed world, MDs would agree to hand out cards for an internet forum. They'd be afraid of being held liable for any bad consequences of alleged misinformation on the forum.

But I hope I'm wrong, it really is a clever idea.  Maybe printing a disclaimer right on the card would help.
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marti

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #26 on: October 10, 2005, 06:42:40 PM »

Interesting and timely topic.   Some of the issues were started here on another thread.  Glad to see it continuing. 

Couple of things come to mind.  The "business card" has more merit than you might think.  From experience I have learned that most physicians don't traditionally refer to a public forum.  However from a historical aspect, this is what is termed in the "business" as a social model forum.  Since the advent of "Annonamous" support groups 1928 or so, many physicians, etc will refer to them as they become more well known.  In 1946 one of the first NPO's used this model and in 10 years went from a support group to recognition as a disease, now researched and funded. This forum has a similar possibility as an annonymous group where personal identity is a matter of choice.  The down side on it is that as far as physicians are concerned there is a "liability" issue of sorts..since this is already a medical condition, and not a matter of choice.  Promote "a nail clipper theory" and they will head for the hills.

The other issue is public awareness and support and how it impacts funding.  Again historically, unless there is support and numbers, little funding is made available for research.  NORD recognition or listing is a prime example of how an "orphan disease" can be blocked from receiving adequate funding.  Peyronies Disease is listed as an orphan disease, recognized as such by the gov't funding agcy NIH..that essentially means that the Peyronies Disease patient count is under 200,000 and (in the case of Peyronies Disease) it is not life threatening.   Unless that misconception is changed within gov't agencies and professional organizations the pharmas won't spend the money.  We have just completed the first public survey of over 400 men re Peyronies Disease.  It has never been done before, and it is a start.  The majority of surveys for Peyronies Disease have far less than that. (One reason to answer annonymous surveys when you find them...published abstracts from verifiable organizations attract the attention of the powers that be...bigger the better. )  In order to change anything, what makes the difference is provable numbers...in otherwords -  facts, not supposition.

In the NPO world I live in there are ways to do it.  Comprehensive education programs based on preventive fact (safe sex is not just using a condom), public awareness campaigns (virtual reality...faster today than ever before)can be utilized, but what you put out, again must be based on fact not supposition or emotion..you must be able to prove it.  Everthing has to be backed up by professional research, professional conduct, and credibility when you are talking "disease" or the powers that be won't give you the time of day.  All of those things have to be built and earned, by lots of very hard work.

Does this mean that the individual must "show his face"..no.  Good marketing, behind the scenes particiaption,  an identifiable "image" can do it for you.   I have often said, give me a few good women...reason being, women comprise the majority of the volunteer force that gets the job done.  Sorry to say this, but the fact is, the reason that womem have an "office of womens health" (and we have pink ribbons and "National Breast Cancer Awareness Month") in the NIH, and men do not is because we got angry, got involved, and volunteered to work for it and get it done (mostly behind the scenes, but with one very loud voice)...and the thing is, except for the "well knowns and public faces" you wouldn't recognize one of us who did it on the street.  But, we have the funding, and not just becasue it is "cancer".

Take Care
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Larry H

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #27 on: October 11, 2005, 04:59:43 PM »

Hawk raised this question a day or two ago.

"First, can it be established that lack of public awareness restricts research".

"Public Awareness" covers a number of things including awareness of the general population, awareness of urologists, awareness of drug companys that research new drugs, and so on. Some are more important than others, so each becomes a topic in itself.

Let's talk for a minute about awareness and how it affects the understanding of Peyronies Disease incidence. In a well reported study by Smith, an autopsy study of 100 men with no known Peyronies Disease found that 22 out of 100 had fibrotic lesions of the tunica albuginea, that's a 22% incidence with men who didn't know they had the disease. The question then is why are there not more studies like this done to get a better grasp on the true incidence of Peyronies Disease. The answer is clear, there are no Peyronies Disease patients, no Peyronies Disease advocate, asking for, demanding, advancement in research. If you read the post from Marti below she is saying the same thing. People need to be heard, it's the squeaking wheel that gets the grease if I can be trite.

Now the same applies to pharmaceutical companys. They need to know the numbers, and the numbers have to add up to cover research and development of drugs, and treatments, and return a reasonable investment. A question: Would any one of you reading this, who picked up a paper in the morning and read that a new drug had been developed that substantially reduced the effects of Peyronie's disease, not be on the phone with your doctor within hours? The pharmaceutical compnays need to know this and they need to know the numbers. The study that I alluded to above by Smith had the incidence at 22% for that study. Let's say that's high, and it probably is, but 10% is resonable, and that would be 14,000,000 men in the US alone. Would the drug compnays take notice of that number. I think so, and I'm going to write to several and ask the question. Gentlemen, it's in the numbers, and once again we are going to have to at least raise our hands anbd be counted.

As far as urologists, well we know that many, probably the majority, think of Peyronie's as an irritant to their practice. They don't understand the numbers, and they don't understand the devastating mental side of the disease. They are more concerned with the life threatening diseases they treat. Hell, men can live with a little bent penis, and yep guys, that's just what we now have, a LITTLE BENT PENIS. Oh, I get angry when thinking about the attitudes some of the uros have towards Peyronies Disease. But once again is it really their fault, or is it our fault for not driving the issue home to them, by not making it clear to them what it's like to live with this condition. It's time for urologists to start hearing some anger from Peyronies Disease advocates, and damnit, Peyronies Disease activists.

When speak of public awareness within the general non-medical population, I don't think that is as important in driving research as some of these other issues, but it is importnent nevertheless. One thing that comes to mind is if a doctor spends part of their career researching a disease, let's say cancer or aids or any other well known disease, and they find a cure their name will be on the front page of every newspaper in the world. If that same doctor finds a cure for Peyronie's...well need I say more! Doctors have egos, why spend a lifetime on research with a disease that not many have and no one really cares about. You know, it's just a little rare disease, and even those that have it don't really care, you never hear them complain.

One final thing comes to mind about the lack of public awareness that really has nothing to do with research. Those of us who suffer with Peyronies Disease and
do so in darkness and solitude. We have a disease that is affecting our life both physically and mentally, and no one knows about it. If Peyronie's Disease was a better known condition, and even if we chose to keep it to ourselves, wouldn't a better public knowledge of the disease make our cross just a little easier to bare?

I'll close with that thought.

My Best,

Larry H

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j

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #28 on: October 11, 2005, 07:34:03 PM »

At the risk of becoming known as the "AA4500 guy" I'd like to again point out that there is, right now, one drug company supposedly developing a treatment for Peyronie's.

Auxilium is now in the "trials about to begin"  holding pattern.  Let's hope this isn't a replay of Biospecifics: millions of dollars of investor money spent without actually completing the trials; then nothing happens until a new round of investors come in and we start over.

If and when AA4500 becomes available - and if it really does anything for Peyronies Disease - there will finally be a reason for many thousands of guys who have Peyronies Disease to call a urologist - and the urologists will have a treatment to sell. If the numbers are what we suspect, the urological community might start taking Peyronies Disease more seriously.  AA4500 could be the catalyst.  But it's still years away, unless someone can think of a way to kick-start Phase III.  What we need is for some billionaire capitalist to develop Peyronies Disease and buy Auxillium outright.  Hey I never liked Bill Gates anyway. Maybe I could make a voodoo doll that looks like him...



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Larry H

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #29 on: October 11, 2005, 08:53:23 PM »

J

We don't need a billionaire capitalist, we need the Peyronies Disease patient to stand up and be counted. Read the Auxillium report to investors, AA4500 is at the bottom of the list of their research. Peyronies Disease research is at the bottom of every list, even the orphan disease list.

I SIMPLY DO NOT SEE WHY YOU GUYS CAN'T SEE THIS!!!

Sorry to sound like a prick, as bent as it may be. You are all my friends.

My Best,

Larry
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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #30 on: October 11, 2005, 11:44:31 PM »

Guys, I just got back from a work trip and admittedly I've only skimmed through all of these posts (awesome that everyone is posting!), but I have a thought...

Instead of trying to find new money for Peyronies Disease research, is there any way that funding for Peyronies Disease research could be earmarked as part of larger sexual dysfunctional research?  It seems as if we go it alone as a Peyronies Disease cause, perhaps we won't reach the critical mass necessary, but if we coudl splinter off a piece of the sexual dysfuntion pie (assuming one exists)....

Perhaps I'm dreaming or know not what I'm talking about.  Just thought I'd mention it.

Glad to be back.  Hello to all.

dcaptain
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marti

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #31 on: October 12, 2005, 01:31:21 AM »

I can't answer the question about splitting off funds under "sexual medicine research".  However even that issue as a general label has problems getting funding unless it is life threatening.  Viagra was one of those discoveries that was a fluke while researching another problem, it just happened to have an interesting side effect....erections!...the rest was more savvy marketing and a good image as a wonder drug.  Big Pharma never misses a money making proposition, they will create a need to move product if they think it will pay off.

The other issue of a white knight to solve the problem is a very old one. Much easier to hope someone comes along to fix the problem than have to do it.  White knights are few and far between so it is up to the serfs to either solve the problem, or spend their time bemoaning their fate and never get anything accomplished.  The more time spent on moaning, is time lost to my mind.  So the issue is "What would it take to create public response?  What is the message we need to get across that will stimulate action?  Ask yoursel "what message out there makes me respond, and take action?  How can you reframe that type of message so it applies to our cause and makes others want to jump on the band wagon?

Take Care

 


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bob

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #32 on: October 12, 2005, 10:30:52 AM »

Ok, maybe I'm not ready to start general conversations with friends and family about my condition, but I am willing to stand up and be counted. Would it help if we flood Auxilium with emails... or even visit them? By the way, they're in suburban Philadephia. Beyond that...? I can certainly send a letter to my congressman, Christopher Shays, but my guess is that it won't count for much. Mine would be one of but a few such letters, and I don't think Shays is unusual in that everything he listens to or acts upon is determined by his read on the public's mood.

Bob
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Larry H

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #33 on: October 12, 2005, 10:38:10 AM »

J

Just a few thoughts on AA4500. I share your enthusiasm over this drug as does my uro. I happened to come across Auxilium's discussion and analysis of financial condition while doing some Peyronies Disease research. With your interest in AA4500 you may have seen this, but my take is that the durg is really on the back burner. It seems that their testosterone replacement drug Testim is the only product being marketed, and research into AA4500 is at the bottom of their list, and if I read this report correctly, is still some years off.

In reading this report it also appears that profitability is also some time off. You have to wonder then if they did come to the conclusion that there would be a huge market for AA4500 if it proves to be successful, would they not not move it ahead as far as a priority. Of course the question then is what can we as advocates do to help this along.

While typing this I see a post from Bob addressing this issue, maybe his suggestiion has merit.

Just some thoughts.

Larry
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marti

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #34 on: October 12, 2005, 12:15:38 PM »

Bob, your comment on the congressman and the "public mood" typifies the issue of congressional support.  Anyother support too.  Right at this time, the only ones really carring about this subject are those with personal experience or those few physicians who are actively involved with fighting for more research, education and funding.  Same with Auxillium, who is very well aware of the Peyronies Disease community efforts to change the status quo.  Again at the risk of being redundant...numbers. involvement.

Those numbers appear small in the pond of "I can turn a profit if the drug is developed".  However it is not necessarily the patient alone who has to engage the issue, it is the "public mood"...those not affected, and don't ever want to be if they knew what they might have in their future.  Think "Bird Flu"..we know it is a possibility, and have for a long time, but the public doesn't think about it until CNN starts warnining them of the possibility they could get it, little is available to "cure" it and it might be coming our way...Same soup, different bowl...Drunk Driving, Second Hand Smoke, Stem Sell Research...all of these campaigns changed ( and are changing ) public awareness and "mood".  The info on the post mortum penile fibrosis will never be read or understood by the general public, but on the other hand, direct it to the public in catchy english targeted to spur action and see what happens.  You as a patient aren't "exposed" (pardon the pun), but the public is saying "whoops..don't want that!"..Mind you it is not scare tactics that needs to be applied, but common sense.  A disease like Peyronies Disease does not have to be life threatening to gain support, only quality of life threatening...and what bigger, more frightening thought than the loss of your right to the most basic of human needs, sexual health.

Take Care
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j

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #35 on: October 12, 2005, 06:55:04 PM »

Larry, I looked SEC filings on Auxilium's web site but couldn't get a clear idea of what their real priorities are. If you have a link to a document that is a summary of their current R&D, I'd be very interested.  I did find this, which sounds sort of encouraging because it puts AA4500 at the head of a list:

" Our current product pipeline includes AA4500 for the treatment of Peyronie's disease an additional product for the treatment of hypogonadism, as well as a treatment for overactive bladder, a medical condition affecting both men and women characterized by urinary urgency and increased frequency of urination."

What I think I've learned over the last few years is that smaller companies like Auxilium basically work on one product and acquire the rights to others to reassure investors.  So AA4500 may be nothing but a line in a Power Point presentation. 

Just to make clear the potential of what Auxilium is sitting on: the theory behind using verapamil for Peyronies Disease - whether topically or by injection - is this: Peyronies Disease plaque is a type of collagen. Verapamil supposedly causes cells surrounding the plaque to produce collagenase, an enzyme which dissolves collagen.  Sounds good, but in reality, it appears not to work. AA4500, on the other hand, IS collagenase, pure and simple.





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Larry H

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #36 on: October 12, 2005, 07:16:18 PM »

J

Here's the link to this report:

http://sec.edgar-online.com/2004/07/21/0001193125-04-121847/section14.asp

It must be something required by the SEC for investors. Anyway, if this doesn't work for you let me know and I'll try to get it to you some other way.

Larry
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j

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #37 on: October 12, 2005, 07:33:47 PM »

Thanks Larry. That document is long and tedious but I think I can see that even if Auxilium's board of directors looked out the window and saw 10,000 people demonstrating for "Peyronies Disease Awareness", there is not much they could or would do to move AA4500 along any faster; all their limited resources are devoted to their number one product.

I actually think that if there's going to be an answer for us in our lifetimes, it's not going to be anything we're currently hearing about - it will come in from out of the blue,  like Viagra. 




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Hawk

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Re: j
« Reply #38 on: October 12, 2005, 08:01:08 PM »

j,

i don't know much, but I know 10,000 people outside of Auxilium's window would move AA4500 on the fast track.  Investors would see to it, and Auxilium couldn't produce, another pharmacuitical company that could move it, would just buy AA4500.  ;)
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Hawk - Updated 10/27/18 - Peyronies Society Forums

j

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #39 on: October 12, 2005, 09:14:12 PM »

Well that in fact is how Auxilium got it. Biospecifics burned up all their cash and couldn't deliver, there was obvious potential for the product, so Auxilium bought it. 

Keep in mind that these guys have access to all the information we have, and lots more besides. They probably know quite well what the numbers are. But the numbers might be even higher for Testim, their main product. Lots of guys think they need testosterone supplementation and are less shy about asking for it.  AA4500, if it works, is a one-shot treatment - but drug companies would rather sell something like Testim that you continue to buy forever. 

I don't mean to be totally negative. Increased public and professional awareness of Peyronies Disease can only help. I'm just expressing my frustration with situations like AA4500, where corporations make money by buying up good ideas and sitting on them. 

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Larry H

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #40 on: October 13, 2005, 10:44:08 AM »

J

The impression I get from reading, or trying to read the report, is that they are steeling investors not to expect profits for some time. As such, they seem to be hanging their hat on Testim to move the company into the black, but still expect that to be a ways off, like several years.

In any case I'm going to write them to see what info I can get, and just ask them up front if solid documentation of a much larger than thought Peyronies Disease patient population would increase their efforts with AA4500.

I may get blown off, but it's worth a shot.

Larry
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Larry H

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #41 on: October 13, 2005, 01:04:31 PM »

Guys,

As of today we have had 12 member responses on this topic. Since there are now 216 forum members, I want to encourage everyone to post their thoughts on how you feel about becoming more open with your own condition. Be as brief as you like, but your comments will be helpful and appreciated.

This topic is something more than just a discussion of interest. In some respects it's a poll of member feelings about Peyronies Disease awareness, and the need for more openess by the Peyronies Disease patient. Information learned here is going to direct a yet to be determined approach to the medical community and government agencys to spur action into the overall scope of issues involving Peyronie's Disease. This is a serious effort, it stems from research some time back into Peyronies Disease classified as an orphan disease, and knowledge learned from that research. To be honest, our focus has been redirected from orphan status to the issue of awareness, as this is what is really needed to drive everything else.

For now, each of you can make a contribution to these efforts by posting your thoughts, they will be enormously helpful. To all who have posted you have my sincere thanks, and please continue. This is a grassroots effort that I believe, as others do, could with hard work, grow into a project that  makes a real impact on the advancement in the treatment of Peyronies Disease.

My Best,

Larry
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kevin

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #42 on: October 17, 2005, 03:23:59 AM »

One last thought on AA4500:
If I recall correctly, wasn't it previously being tested for non-Peyronies Disease purposes?  I would think that if a company holding the patent is pressured from other groups as well, i.e. those with DC and even some serious life-threatening fibrotic disorders, they might move faster on it.   Once approved for those uses, phsicians could prescribe it for OTHER "off-label" uses (like Peyronies Disease!) just as many other drugs are.  Anyone know if non-Peyronies Disease  patient advocates are still pushing for trials and approval of AA4500 (or whatever other name it has had?)
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Larry H

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #43 on: October 21, 2005, 03:02:05 PM »

"Anyone know if non-Peyronies Disease  patient advocates are still pushing for trials and approval of AA4500 (or whatever other name it has had?)"

Kevin,

I want to ask you up front to please not take offense at my remarks because they are not ment to be in any way derogatory. However, your statement above highlights one part of this whole issue of Peyronies Disease openness, awareness, and advocacy.

Taking the sentence above a bit out of context, one could interpret the meaning as: "Let's hope there are patient advocates with other diseases that will help the Peyronies Disease patient by riding on their coattails as they do the work". Now I know that's not what you were saying, but it does help illustrate the need for those of us who suffer with Peyronies Disease to become advocates for our own cause.

In my 5 plus years of research and forum posting I only know of three people, and I'm one of the three, who would be open in a public forum about our disease. I'm sure, and I hope there are others, but I only know of three. One reason I asked Hawk to start this topic was to identify others who are willing to "go public" if you will. I think a small group of advocates may be all that's necessary to get the awareness ball rolling.

I know of no other disease that causes the patient to shroud their condition in such secrecy. In almost 300 years since Peyronie first identified it, it still remains a hidden closet disease. Even in this age of openness with men discussing such things as Aids and Erectile Dysfunction, our desease remains hidden from most who have not been touched by this horrable condition.

Now I know there are some who say "O.K. Larry, you've made your point, now drop it" well I'm not not going to, I'm going to keep at it until I get a few who will say: "alright I'm with you so, where are we going?"

Guys we've got to do this, we must at least get a small group willing to be vocal and to start to stir the pot to make people listen.

Larry H
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Old Man

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #44 on: October 21, 2005, 03:11:00 PM »

Larry:

If I am not already one of the three, count me in! I would go public in a heart beat. There is much to be gained by doing so. Since prostate cancer surgery, have lost all modesty when it comes to men's health problems and making the public aware of them.

Old Man
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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #45 on: October 21, 2005, 03:37:32 PM »

Old Man:

Thanks my friend, but you are one of the three. I knew I could count on you.

Let me say to all that I hold no animosity at all towards those who wish to remain silent. I know the mental anguish this disease imparts and there are many very good reasons to remain sailent.

Larry
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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #46 on: October 21, 2005, 04:53:41 PM »

Larry:

Our local chapter of the cancer support group called US TOO has our own website and the leader has agreed to post the link to this forum on it. There are several guys in our chapter that have Peyronies Disease, but are reluctant to talk about it at the meetings. I openly talk it up when the chance comes open.

Let me know if there is anything that I can do on this end to help out.

Old Man
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Age 90. Peyronies Disease at age 24, Peyronies Disease after radical prostatectomy in 1995. Heart surgery 2004 with three bypasses/three stents. Three stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries in the last 10 years.

Barry

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #47 on: October 21, 2005, 10:22:33 PM »

Hi guys,
I am the third person Larry speaks about. Larry and I have frequent conversations about Peyronies Disease awareness and open conversation having the disease. I too feel that there are many reasons why a man may have a problem speaking about Peyronies Disease in any venue. However, until this issue is resolved and men are more open about this condition Peyronies Disease will be at the bottom of every list that exists in the medical, pharmaceutical and research communities. Silence is a given privelidge that we all have but until that silence is broken and a reasonable amount of men begin to talk about it nothing happens..............and gentlemen that's the bottom line. We either open up and talk about Peyronies Disease like Bob Dole does Erectile Dysfunction or we have another 3 centuries of NOTHING!!!!

Warm Regards to All,
Barry
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Larry H

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #48 on: October 23, 2005, 05:41:52 PM »

Barry and I have spent many hours on the phone discussing this awareness issue and many other issues relating to Peyronies Disease. In my five years or so studing the issue of Peyronies Disease, he has been my single greatest source of information and knowledge on all aspects of Peyronie's. He has been my mentor, and he is my very good friend.

We have developed a relationship where we feed off of each others information and ideas, and we realize that there is but one absolute with Peyronie's Disease. That is, if the treatment of this disease is going to advance with any speed, it is going to be through the formation of a patient activist group willing to be heard and willing to press those that can make a difference.

Last night I heard an ad by a drug company advertising on Fox news about a drug for "Restless Leg Syndrom". There is another ad on TV about a drug for toenail fungus. Guys we have Peyronies Disease, a disease that distroys families and lives, and no one gives a whit about it except us, and a few urologists, and not many of them. It's time to start pushing.

In a few days I'm going to post an outline of what we need to do to get the ball rolling, an outline of attack if you will. I'm going to ask for a few to come on board and help. Right now we have Barry, Old Man, and myself as the nucleus for this group. I would like to have 12, or more if possible. Think about it, we must develop an patient activist approach to Peyronies Disease, it's overdue.

My Best,

Larry H
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Hawk

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Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #49 on: November 02, 2005, 11:04:04 PM »

Tonight I attended our monthly Prostate Cancer Support Group Meeting.  The scheduled speaker did not show up so we discussed ideas for future meetings.  I asked for a few minutes and brought up Peyronies Disease.  I discussed the increased incidence of Peyronies Disease among men with radical prostatectomy, the beginning signs, the potential severity, and gave them our forum address.  Several wrote it down and one man approached me and briefly said he asked the urologist about those symptoms just last month.  I spoke to another man that is taking bimix injections from a doctor in Manhattan (on my recommendation).  I withdrew that recommendation, and informed him of the symptoms that I had not been warned about when I was injecting bimix.

It isn't earth shattering, but it was 45 people at one setting and it is a small start.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums
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