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Author Topic: Why we will never get anywhere  (Read 3424 times)

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emasculated

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Why we will never get anywhere
« on: March 13, 2014, 10:32:49 PM »

I want you all to make a comparison with two somewhat related conditions: dupuytrens (in my opinion this disease is AN UTTER JOKE compared to Peyronies) and scleroderma.

Compare: The Peyronies Disease Society

with: Home | Dupuytren Foundation

and: Scleroderma Research Foundation
as well as: Scleroderma Foundation Home Page - Scleroderma Foundation

First thing that comes to mind among many: Where is our donate button?
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"Without health life is not life; it is only a state of languor and suffering - an image of death."

james1947

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Re: Why we will never get anywhere
« Reply #1 on: March 13, 2014, 11:28:05 PM »

Quote
First thing that comes to mind among many: Where is our donate button?
We are not accepting any kind of donations.
It keeps our forum independent :)

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Old Man

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Re: Why we will never get anywhere
« Reply #2 on: March 14, 2014, 08:49:30 AM »

emasculated:

Just read your comparison between Peyronies Disease and Dupuytren's Contractures. Speaking from one who has DC, Peyronies Disease and Lederhose, you need to educate your self much better than you presented about them in your references.

DC in ones hands can and will cause that individual much more trauma overall than Peyronies Disease ever even though about!! I had DC so bad in my left that surgery had to be performed just to let me open my hand enough to use it at all. Just being able to hold a cup of coffee, use a knife or fork presents a much better condition than not being able to penetrate for sex. I know that you, a very young gentlemen, this does not make sense. But, due to my many years of experience over my adult life, (I will be 85 years old this Summer) I know the ins and outs of what difficult physical conditions can do for a person.

Having all three of the above diseases which are definitely connected genetically, I know what problems it has presented for this old body over all those years. IMHO, it is a matter or personal concern over what each of these presents for oneself. So, bottom line, please be careful of what you say about physical conditions that you may or may not know the total picture. Experience is a much better teacher than reading about conditions one does not have.

Old Man

BTW: I am a third generation descendant of immigrants from Hamburg, Germany way back in the 1800s!!
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Peyronies Disease at age 24, Peyronies Disease after radical prostatectomy in 1995. Open heart surgery 2004 with three bypasses and three stents. Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries in the last 10 years.

Norm

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Re: Why we will never get anywhere
« Reply #3 on: March 14, 2014, 09:00:55 AM »

I will second Old Man. DC is not a joke compared to anything! I have it myself. And I am a professional musician. My left hand, which has knots and tries to curl on me, is critical to my being able to play a guitar. That guitar playing earns a part of my livelihood. My penis never helped me earn money, that I know of. It is hard to label one disease worse than another. It depends too much on perspective.  Most of you could probably make the choice of saying I'd rather have DC than Peyronies Disease. In my case, it would be a tough choice. As fate would have it, I did not have to choose. I got both!
Norm
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emasculated

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Re: Why we will never get anywhere
« Reply #4 on: March 14, 2014, 01:56:32 PM »

I was more referring to the amount of money these organizations gain in terms of donations. E.g. scleroderma has many prominent people supporting it and as a result made over 25 million dollars in donations.
I can imagine Dupuytrens is horrible. Not to be able to open your hands and do the most basic everyday tasks must be frustrating. And if you have Peyronies and DC is really terrible. But I mean DC alone compared to Peyronies... come on.

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"Without health life is not life; it is only a state of languor and suffering - an image of death."

dioporcolorisolvo

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Re: Why we will never get anywhere
« Reply #5 on: March 14, 2014, 02:55:14 PM »

Come on guys, don't say things that don't exist.
DC is NOT comparable to peyronie. Peyronie is one of the most bad disease of the medical science.
Maybe for a man of 60 years DC is comparable to peyronie, for a Young man not.
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damian

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Re: Why we will never get anywhere
« Reply #6 on: March 14, 2014, 02:55:59 PM »

I'm stuck with my theory, that Peyronies Disease is much more rare than we think. Compare the number of members on other forums for diseases with a much lesser epidemiology than Peyronies Disease. You'll find several forums for parkinson, where people can't even type without help or psoriasis.
We have one real forum with a ridicolous member count, and several scam sites. Nothing else.
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RoyHobbs

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Re: Why we will never get anywhere
« Reply #7 on: March 14, 2014, 03:50:01 PM »

There are a number of people on this forum who have admitted that they have yet to even see a doctor. I think there are a lot more people with peyronies than has been reported. Some don't even realize they have it while there are others too embarrassed to seek help. Official numbers have to be wrong.
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james1947

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Re: Why we will never get anywhere
« Reply #8 on: March 14, 2014, 05:17:54 PM »

RoyHobbs, I am with you regarding your post bellow.

This topic went completely out of track. The subject in emasculated post was donations!!!

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

KAC

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Re: Why we will never get anywhere
« Reply #9 on: March 14, 2014, 05:48:47 PM »

Norm--thanks for making me laugh. I have not made a dime off my penis either.  You reminded me of the joke my uro made when I agreed I'm not going to pursue Xiaflex (for now). He said it's never going to be a Maserati again.  But, hey, it's working--and I'm learning to be content with that.
KAC
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