Peyronies Society Forums

Please login or register.

Login with username, password and session length
Advanced search  

News:

ALL Members PLEASE Add a Signature line with age, history etc
PROFILE -> FORUM PROFILE -> SIGNATURE
More instructions here -> Signature Line - History - Peyronies Society Forums

Pages: 1 [2]   Go Down

Author Topic: Awareness of Peyronies Disease Vs. the Patient's Desire for Anonymity  (Read 16855 times)

0 Members and 1 Guest are viewing this topic.

Will

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 19
Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #50 on: November 06, 2005, 08:55:56 AM »

Everyone...this is just a thought that has been laying on my mind (just like peyronie's disease does!) and I thought that I would throw it out to you all:  For awhile now, I have read different articles of Bill Clinton having peyronies disease.  Is this true, or just some type of rumor?  If it is true, what if hundreds, or maybe thousands of peyronie's disease victims (male and female) wrote sincere letters to him, to encourage him to help in peyronie's disease getting the proper awareness it needs for society and medical community to give this disease more attention.  He could be the major spokesman to "get this ball rolling."
Now, I am aware what some are thinking..."He would never admit to the public he has this disease."  His political career is not even close to being over, and neither is his wifes'.  Helping society is what its all about for these political figures, hence, more votes, popularity, and staying in office.
Again people this is just an idea.  It is not like an "unknown" would be out on the main stage soliciting help for this disease (not during the beginning anyway) but possible a strong political figure, who is only an address away.  It would be so easy for "all" of us to just write a letter to Him, and see what the outcome might be.  If positive, wouldn't  it be much easier for us to then stick our neck out and help Him out at our community level, raising awareness?  Bob Dole did it for viagra, maybe Bill Clinton will help us....


Will
Logged

Barry

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 62
    • Peyronies Disease Society
Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #51 on: November 06, 2005, 11:54:22 AM »

Will,
To answer your question, Bill Clinton most likely has Peyronies Disease. The only other possibility is he has a remarkable conjenital curve. This all came out during the Paula Jones incident when she mentioned that she had intercourse with the president. Paula Jones made reference during the Grand Jury hearings (a leak) that President Clinton had a curvature.

I have all the contact information for Clinton if you would like to contact him. I have however done that already about three months ago, and still wait for a response. Honestly, I expected to be visited by the Secret Service as a result of my actions.

In my most humble opinion, I don't think with all that I have said that Clinton will admit to anything that relates him to Paula Jones for obvious reasons.

Barry
Logged

steven

  • Voting Member
  • **
  • Offline Offline
  • Gender: Male
  • Posts: 22
Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #52 on: November 07, 2005, 01:06:24 AM »

Will,

I think if Clinton admitted himself that he had Peyronies Disease that would be appropraite, but since he came out in a lawsuit I don't think Clinton would want an entire Peyronies Disease board contacting him. 

Lets say , Bob Dole 's ex wife sued him for a divorce becuase he was impotent,  and it became a matter of public record, would it have been appropraite for an impotent message board to contact him and request he go public to help their cause, assuming he never admitted it, but his ex wife told the public in a disputed lawsuit.   That's similair to what you propose asking Clinton. That's pretty close to harassment I think, in my opinion....

Steven


Logged

Larry H

  • Solid Contributor
  • ***
  • Country: 00
  • Offline Offline
  • Gender: Male
  • Posts: 155
    • Larry Holcombe - Author
Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #53 on: November 08, 2005, 12:58:01 PM »

I've been away for the last week so I've got a lot to catch up on when I can. However, in reading through the posts I saw this and must say that I think Barry is dead on. Bill Clinton still has a very active political life, and I'm sure he hopes to be "First Man" in the near future. He does not want to do anything that reminds folks of "zippergate", and of course the only reason we know of his Peyronies Disease is because of Monica. I don't think he would entertain the idea of being the National Peyronie's spokesman.

Larry H
Logged

Larry H

  • Solid Contributor
  • ***
  • Country: 00
  • Offline Offline
  • Gender: Male
  • Posts: 155
    • Larry Holcombe - Author
Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #54 on: November 10, 2005, 10:13:26 AM »

To All:

You may have noticed that a new category, "Peyronie's Advocacy Group" has been added to the General Category. This has been discussed with Hawk for some weeks, and the new category is now under construction. This will be an informational area to keep all advised of the efforts and progress being made as Barry and I work with Peyronies Disease awareness.

Shortly I'll be posting a general plan of action outline and will invite comments and suggestions from the forum members. The area will also be used to post correspondence to and from various interests relating to Peyronies Disease research, treatment, or whatever and wherever our work takes us. Detailed information will be posted at the PAG location within a day or two.

Larry H
Logged

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4298
    • Peyronie's Disease
Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #55 on: November 10, 2005, 11:26:40 AM »

I want to thank Barry and Larry for agreeing to direct our advocacy effort.  We have tried different approaches and leaned several things along the way.  We learn and make progress by finding out what doesn't work as well as by what does. As we have learned with Barry and Larry's lead, we have adjusted accordingly.  Both of our Co-Directors have laid much groundwork and I am confident that we have real potential to make a positive impact if we follow their lead. 

I ask for your support by participating in what they ask and in suggesting ideas.  The Peyronies Advocacy Group (PAG) is our alternative to pasively sitting by in the role of victims and waiting for help.  As with every successful effort, we will consider several ideas for every idea that gets some traction.  We need members to give feed back on those ideas as well as brainstorm and supply ideas for consideration.  There will be opportunities to work in the background as well as opportunities for those that are willing and able to step up to the front and take a lead.  This will not be a battle that falls to a short flurry of activity but to a sustained effort. 

We have contacts, committed leaders with talent, loyal members, and a worthy cause.  It is time to ask ourselves if we are net givers or receivers in the battle against Peyronies Disease.  Clearly Larry and Barry have shown where they stand.  We are very fortunate that they stand with us.
Logged
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

marti

  • Guest
Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #56 on: November 16, 2005, 03:09:03 PM »

I wasn't sure where to put this, since it is not directly related to advocacy, but it does have to do with awareness of the "Desperate Measures" that we take to solve our common problem of Peyronies Disease.  So here goes..

In the past 4 years I have read, reviewed, cut and pasted over 20, 000 posts concerning Peyronies Disease.  These posts come from many sources, primarily the Peyronies Disease forums on the net and the "I've got the Cure" businesses who prey on the Peyronies Disease patient .  While you and I know what we go through in the desperate search for information, etc. the medical community has (for various reasons) remained insulated in their approach.  So I started a "cook book", primarily for my own information (personal references, names etc, not included just the basics).  In it is every therapy, concoction, experiment, and off the wall voodoo approach I have found.  I mentioned in passing what I was doing to one of our doctors.  His comment , "They are doing WHAT! send it to me, I want to see this".  I said sure, and sent some of it. Note: This also included the recent "Peyronies Disease causes death report" located on the BTC.

Upshot of all of this, is that he was planning on making a slide presentation of some of these "recipes" with the possible intent of showing it this week at the Peyronies Disease symposium during his presentation at the SMS Conference in NYC. From what I gather, because our conversations have been quick one liners, this may bring sharp focus to the abstract on Physician Knowledge, and how we have had to fill the gaps...It may also bring into clear focus that the medical community can no longer stay insulated where Peyronies Disease is concerned. How will they react..who knows, but those who attend can no longer say "Oh, well".  At anyrate, reardless of the outcome, it is one step further on the road.

The down side of all of this personally, is that we (APDA) were invited to attend, but financially unable to do so...they don't want to rent you a room in New York, they want you to buy shares in the hotel!  However thanks to the continuing efforts of  our doctors, we are represented there as a community.

When they get back and I pick their brains, I'll be able to write up the results of the conference, there are 23 abstracts being presented on Peyronies Disease and associated issues.  If it does get presented, the "cook book" should raise some eyebrows!
Logged

j

  • Major Contributor
  • ****
  • Offline Offline
  • Gender: Male
  • Posts: 380
Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #57 on: November 16, 2005, 04:01:02 PM »

I'm sure there are a lot of laughs to be had from that scrap book. But I think your basic idea is great.  If nothing else, it will show the pent-up demand for a meaningful treatment, which may not be at all obvious to MDs based on just what they see in their offices. Many guys with Peyronies Disease will never go to a doctor. Many will go once or twice and then give up.  But the bottom line is that this is not a condition we can just "live with" - instead we'll spend the rest of our lives trying anything that might possibly work.

Breaking up a tangle of interlocked collagen, without damaging the surrounding tissue,  is not beyond current medical technology.  Anti-fibrotic drugs, injectable collagenase, heat, and mechanical perforation are all possibilities that have already been shown to work to some extent. What's needed is for some MD or medical group to do some serious follow-up  - work out the details, fine-tune the procedure -  move some of these ideas out of the  "promising new study" graveyard  and into the urologists' offices.







Logged

marti

  • Guest
Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #58 on: November 17, 2005, 12:58:21 PM »

Thanks J, that is the focus and intent for the whole ongoing project.  That the Doc's picked picked up on it just goes to show  that they are on the same page as we are.  It isn't enough that we continue to focus our "plight" inward, the total image must be brought to light and focused outward.

That image is not of a specific man, but the image of all men who face Peyronies Disease with courage, yet are reduced to taking desperate measures, primarily because of a lack of general public knowledge of what they have to do.  In short you spend your life in Survival Mode and are forced to tilt at windmills.

Once our 501 c 3 is approved by the IRS, the funding for which incidently came from a pharmaceutical company involved in Peyronies Disease research, I will probably use some of it to go after non restricted grants to do "public awareness campaigns" and physican /patient collateral materials and distrubution outlets.  If I were to write a proposal narrative, I'd use your "bottom line "statement in the opening sentance, because it typifies every post I have ever read.

One of the biggest challenges from my view, and in my position with APDA, has always been the lack of funds (and Manpower) to do what needs to be done.  From getting the computer programs needed to support and facilitate what we do, to printing and distributing the informational collateral material for physicians to give to their patients.  We have the subcomponents for the individual projects, the information and supporting stats, we have the text, shoot we even have the distrubution method, we just don't have the funds!....But with the expected approval some of that is gonna change!.... I have been in the NPO business for 30 years, and I know it can be done.  But only with Focused Help and Support.
Logged

Larry H

  • Solid Contributor
  • ***
  • Country: 00
  • Offline Offline
  • Gender: Male
  • Posts: 155
    • Larry Holcombe - Author
Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #59 on: November 19, 2005, 12:34:02 PM »

For any that's interested, I just posted a letter in the PAG General Category sent to Auxilium concerniing the status of AA4500.

Larry
Logged

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 4298
    • Peyronie's Disease
Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #60 on: November 19, 2005, 09:37:13 PM »

Larry,

We appreciate both  the obvious and the behind the scenes work that you are doing.  When it comes time to ask for help, I am sure that appreciation will be apparent.

Here is the link to Larry's letter.

http://www.peyroniesforum.net/index.php?topic=137.0.html
Logged
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

marti

  • Guest
Re: Peyronies Disease Awareness Vs. the Patient's Desire for Anonymity
« Reply #61 on: November 22, 2005, 11:46:39 AM »

I just got a brief email frm Dr Levine, I had asked him to give me a report on the SMS Conference.  He will be sending a full report this weekend while he recovers from knee surg.  But here is an item of interest for everyone.

Dr Levine is the one who has taken my "desperate measures cook book" and turned it into a slide presentation.  He did present it!  His one line statement to me was "The meeting went very well and lots of Peyronies Disease
discussed
including my Peyronies Disease Voodoo list."  (Incidently Dr. L has a great sense of the absurd  :D).  Well they are talking..and with these Doc's talk turns into action..more than one pharma comes to them with projects. 

I can hardly wait to get it,  ;)
Logged

Larry H

  • Solid Contributor
  • ***
  • Country: 00
  • Offline Offline
  • Gender: Male
  • Posts: 155
    • Larry Holcombe - Author
Reply to Jim and Hawk
« Reply #62 on: November 22, 2005, 04:10:20 PM »

Thanks fellows, I also look forward to their reply. However, Barry and I harbor no illusions about the difficult task in making headway with awareness and advocacy. We are probing many areas to see where efforts of an advocacy group can make the greatest inpact. We will keep the members posted as to our efforts and hopefully, our successes. The continued support of the members is much appreciated.

My Best,

Larry
Logged

Larry H

  • Solid Contributor
  • ***
  • Country: 00
  • Offline Offline
  • Gender: Male
  • Posts: 155
    • Larry Holcombe - Author
Re: Please Read
« Reply #63 on: August 10, 2006, 06:29:22 PM »

Just below this forum category is the Peyronie's Advocacy Group category.
I made a post this morning about our new efforts in the area of promoting awareness and there is a new web site page under "Awareness". I would like all members to read both when time allows, and express you ideas, thoughts and comments under the topic created for such in the PAG category.

Thanks,

Larry
Logged
Pages: 1 [2]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
2 Replies
1828 Views
Last post November 30, 2012, 04:42:45 PM
by Skjaldborg
3 Replies
309 Views
Last post March 26, 2019, 11:01:03 AM
by Stepone
2 Replies
223 Views
Last post May 21, 2019, 05:01:13 PM
by Bubba dawg