Member count

[damian]

Why aren't here more people on this forum? I found a german forum too and there are ridiculously few members.  I'm a bit confused, because I researched a bit and learned that for some more rare diseases are several forums with more forum members than here. According to wikipedia, almost every tenth male gets peyronie's in their lifetime, but here on our forum are only around 5000 membersm mostly not active. The argument that mostly older men are suffering from this disease and are not using computers is not valid, because I found a parkinson disease forum with almost the same member count. There are mostly older people too and are pretty handicapped when it comes to type a text. And if you take a look on the epidemiology of parkinson it's 0,03%.  I know, every parkinson sufferer would be rather in our place, but peyronie's is devastating enough to have the urge to seek for any kind of information you can find. As I registered to this forum I wasn't sure I have peyronie's. This post is not going to help anyone here. I'm just curious. I hope I'm in the right section. Greets

[Skjaldborg]

Here's you answer:

You: "Hi everyone, I have Parkinson's/cancer/rheumatoid arthritis/tennis elbow/allergic to dairy/etc.,etc.."

Everyone: "We are so sorry. You are so brave. Have a hug and a cup of coffee."

The conditions above are socially acceptable to share. It's normal to talk about those things without feeling ashamed.

However, having a painful, permanently deformed penis is not. Even with anonymity, posting on this forum is tantamount to an admission that you are not what you once were before the disease; it's an admission that something is wrong with the core of your identity as a man. It's a difficult thing for many men to discuss. We actually have a lot of members here, but many choose to lurk instead of post and that's just fine. As long as they get the information they need.

If you are interested in growing the membership or otherwise contributing to this forum, we have several ongoing projects involving mailing urologists about our forum and collecting a list of Peyronie's-savvy doctors as a reference for our members. You are welcome to participate here: Peyronie's Advocacy Group - Awareness/Advocacy/Activism - PDS - Peyronies Society Forums


-Skjaldborg

[damian]

I actually registered here to have a better insight. When you are not registered, you can't see everything. Like posts of specific members. I was trying to find a case like mine, not to post here. I assume many guys are doing the same. This is the only forum on the web that is considerable. When your doc says there is no help for you, you would search the web for more information out of desperate and you would stumble over this forum. If you consider just the population of the US, divide it by two, you have more than 150 milion men. 10% of 150million is 15 million. 5 thousand is a miserable number. I can't imagine that someone is ashamed to register on a forum. It's just a prove that those numbers aren't accurate and that this disease is crying for more research. My guts are telling me that this disease is much rarer than we think.

Psoriasis is an awful disease. We aren't notice all the people with this disease, because the hard cases are not leaving their homes. I found several forums in different languages. One from the UK has around 20000 members.

I wasn't trying to offend someone on this forum. This forum is a goldmine and I'm spending a lot time here and I appreciate your work, but I'd love that here are more people posting. 5-6 posts a day are too little.

[james1947]

First I will second Skjaldborg on every word.
Second, statistically we have average of more than 10 times guests than members watching the forum. In the pics are more than 30 times guests than members.
Third, MOST people I know are considering the doctors as knowing what they are doing. Those people will never search for a solution by the Internet.
Fourth, it seems that many people find ways to make busy them selves, taking the Peyronies as something that don't have what to do and are becoming not interested in the subject, living with what GOD have given to them.
My private opinion.

James

[damian]

Do you mean with MOST people, most people you know suffering from Peyronies Disease? How do you met this people? If not, psoriasis sufferers are people too, who are in the same circumstances as we are (have lives, relationships, internet.. etc.). Psoriasis sufferers know exactly that they have psoriasis, without any doubt. How many people here have a congenital curve or hard-flaccid which they confuse with peyronie's on this forum? If you know there is no cure you would try too seek for scientific breakthroughs, out of desperate, as I did when my hairloss began.
Consider please that in every forum the guest count is much bigger than the member count. Just saying.
This forum is a goldmine of information as i said. But more members would mean more experience. More things people tried.

Maybe you are right. When I'm feeling better about this, I'm not around here for days. But I assume it would be the same if I had another disease.

My gf broke up with me the other day and now I'm just lurking around the web, hoping for some good news from dr Atala. I'd love to know how other people in my country are coping with this. I didn't find any post on any forum of a curved penis in my country and my Uro never mentioned peyronies and any patient suffering from this. I'm blessed with my english "knowledge". It's a small percentage of people who speak any foreign language here. How would it feels like when your penis shrinks gradually (as in my case) and you have no clue about what's happening?!

[james1947]

Researchers put the numbers of Peyronies sufferers to be between 3% and 10%.
I don't have any reason to be in doubt in the subject.
I will just repeat what Skjaldborg has said:

having a painful, permanently deformed penis is not. Even with anonymity, posting on this forum is tantamount to an admission that you are not what you once were before the disease; it's an admission that something is wrong with the core of your identity as a man. It's a difficult thing for many men to discuss. We actually have a lot of members here, but many choose to lurk instead of post and that's just fine. As long as they get the information they need.

This is non existent with other diseases.
One more thing: We had many past members that posted regularly, some frequently. Ones they find they solution for the Peyronies they disappeared. Some even put a not: Hi guy's, I am done, don't see you anymore. This is the human nature, just see how many people answered to the challenge to help with the forum

James