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Re: Message for the forum

Written by Robin at 17 Apr 2007 15:55:04:

As an answer to: Message for the forum written by Louis at 23 Jan 2007 22:24:32:

Hi Louis, (Stevo and any others)

sorry things are worse for me than I realised - I been in hospital and lets call it a nervous breakdown and its going to be 6 months break from everything ... at least ... Ive just been doing too much ...... anyway Im glad to see the forum is expanding since Im gone ...

I will try and answer questions

>First of all, Welcome back Robin, I'm glad you are still here. As you originated the forum, it's good to know that you're still around, even if you now want to take a back seat. I am however sorry to hear about your recent troubles. If I may I'd like to express my opinions on the forum.
>I think the forum needs developing in many ways. Firstly, what is Parsimony?

Parsimony own the web space ... the message of thanks is pure politeness

>I think this name is confusing and doesn't have any relevance to our cause. The same can be said of Male-initiation!!!

Yes this is a long personal story and probably to encourage myself I chose this name ... I believe we can live with it for a while longer.

>Surely something like www.atypicalpenilefractures.com is better. I also feel the overall look of the site needs upgrading;

well I have been asking is atypical penile fracture actually a good name or does it confuse doctors? basicly if you want to start a separate site called however you want, you or anyone could repeat the info on my male-initiation.net site ... I claim no copyright for the info on penis fracture ...

> there are other forums which show that men are suffering in the same way as we are - we could establish links to these. There are articles like the one 'J' (forum member/writer) refers to, about "new erection drugs being on the horizon". These focus on naked DNA and the developments that are being made here. Again a link to these articles would be useful.

In just about every footnote and announcement I have made I have asked for people who are online to do a bit of research and give feedback to help provide links ... I think only one person ever helped with this --- please collect any links and simply collect them add them to the list of links on the bottom of my announcement and post them on the forum periodically

>There is the work that Dr.Anthony Atala is conducting on tissue engineering which is promoting tissue repair - no matter what the initial problem is (this includes nerve damage - look at his articles dated 23 April 2003). There are more recent updates to this article.
>Atala's work concentrates on a cure (not treatment) for men who have had an injury to the penis. Read up on his work! Go to Google and type in Atala and penis repair - Ok it's all with rabbits and dogs at the moment but t's moving in the right direction. He also runs a company called Tengion. Look at http://tengion.com/library/a_new_vision.pdf

well great you said somewhere you dont know how to do html I suggest you learn the simple lesson of writing links (look at the source text its simple) and write up a list of useful links
http://tengion.com/library/a_new_vision.pdf

>There are many things which need to be done to encourage men to talk. The Internet is a powerful tool. At the moment men are too embarrassed to come out into the open, but the Internet gives them a vehicle to talk without fear of embarrassment or shame.
>
>We are all from many parts of the world, I'm in the UK and I feel I have a pretty good idea of who the best urologists are over here, so if an individual from the UK needed to be pointed in the direction of a good urologist i feel I could help. I also have good knowledge of some in the USA. What I lack is knowledge of what's happening in Europe with regards to atypical penile fractures. The Internet is very USA centric at the moment.
>
>I have studied this problem for three years now. The thing that makes this forum stand out for me is that it is supposed to be dedicated to men who feel they have had an atypical penile fracture and are experiencing ED because of this. No one else will listen to them and urologists keep on telling them that nothing is wrong, the problem is psychological or at best they diagnose peyronnies desease.
>
>We cannot change the website overnight, the developments will be ad hoc and gradual, but what we need to do is be there for others who come to the website in desperation. We need to make sure that questions are answered and that others know that we exist. I feel that it is important to keep the identity of the website distinct; i.e. this is a website for non-typical penile fracture.People who come on to the forum to discuss other penile issues should be diplomatically and sensitively directed away to sources of information that can help them. I don't want to come across uncaring but if we have all manner of penile problems on here then it dilutes our distinct niché.

I totally agree ... other forms of penile problems should be politely informed that we have enough to do sorting our own problem out ... (though when I started I answered other questions at the end I was politely refusing to answer )


>So what can we do? for the moment let's keep talking, share experiences by posting to the forum. I've not been able to talk to anyone, other than my partner and my urologist, for three years. We should all keep an eye on the website and make sure everyone gets a response.
>I am in the computing business, but I am no good with HTML and web design! Is there someone out there who can help us?
>I look forward to hearing all responses.
>Louis

good luck Louis and anyone helping him

lots of love

Robin




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