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Author Topic: Raw TV in the UK  (Read 9437 times)

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Hawk

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Raw TV in the UK
« on: September 24, 2006, 08:46:22 PM »

I recieved an email from rawtelevision.co.uk requesting someone to talk to "someone" concerning an upcoming show on psychological problems resulting from physical ailments.

Is anyone familiar with these people, their show, or the location they air?  The address would indicate a UK location but I guess they could air in other places in adition to, or instead of the UK

I replied and requested clarification.
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percival

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Re: Raw TV in the UK
« Reply #1 on: September 25, 2006, 09:18:46 AM »

Hawk
I checked their website and they seem to make a variety of programmes for some of the main tv channels here. Some are serious, some are more entertainment, but they seem to be ok - see www.rawtelevision.co.uk.
However, I don't think that I would want to apprear on national tv to discuss my 'unit'.
Regards
Percival
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Hawk

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Re: Percival
« Reply #2 on: September 25, 2006, 10:46:51 AM »

Thanks for the input Percival.  I figure enen if it is sensational coverage, at least it is awareness and helps the condition to gome out of the closet.  They indicated they wanted to talk to someone and I asked for more specifics, ie:, an expert, a patient, in person, by phone, by email, etc.  I will keep everyone posted.
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Hawk

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Re: Raw TV in the UK
« Reply #3 on: September 25, 2006, 11:38:46 AM »

Raw TV got back to me.  I think this is a great oportunity for awareness and we need to muster all the cooperation we possibly can.  Specifically; are there UK specialists that we can put these people in touch with?  What PDS members in the UK would consider a confidential phone conversation?  Would anyone consider a more open role?  Even though the time devoted to Peyronies Disease may be limited, this is almost a first, and a real ground breaker in awareness.  I think we need this to be a coordinated effort and not random contacts.

Here is RawTV's resopense for greater specifics:

thanks you for getting back to me.  At the moment I am just trying to gain a greater understanding of the problem, the technicalities and the psychological affect. If you have both scholarly contacts and those with personal experiences it would be much appreciated so I could broaden my knowledge, any conversation would be confidential.

It would need to be in the UK and my preference would be to speak to someone on the phone. Thank you for your help.

Best Wishes
Zander Levy, Raw TV, 0207 284 6892


Their original message to me was:

Here at Raw TV we are looking into doing a documentary series on the psychological problems that manifest themselves as a result of physical  ailments i.e. acne, extreme blushing. One of the things we have been  looking at is Peyronie's disease and in particular congenital curvature.

I am interested in how it can affect confidence and the difficult decision of whether to get what appears to be major surgery. If there is  someone available who could discuss these issues and help clarify some
things with me it would be much appreciated. Thanks, best wishes

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Old Man

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Re: Raw TV in the UK
« Reply #4 on: September 25, 2006, 04:45:59 PM »

Hawk:

Sounds like you are on to something that will get good public attention, at least in the UK. Might even spread to the US if enough attention is brought to bear on the media. If prostate cancer can get the attention of the news media with persons like Senator Bob Dole, surely some member of the Congress will have this problem and get on the band wagon if they were only known to us, etc.

Old Man
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percival

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Re: Raw TV in the UK
« Reply #5 on: September 26, 2006, 10:08:38 AM »

Hawk
I rang the number you gave and spoke to Zander Levy at Raw TV UK (0207 284 6892) offering to help with his research on Peyronies Disease. He sounded interested and had made a good start in trying to understand this complex field. He found this forum very useful.
I gave him the names of two urologists that I have seen here and said he could contact me again if he wants to discuss it further.
Regards
Percival
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Hawk

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Percival - Contact with RawTV
« Reply #6 on: September 26, 2006, 10:33:15 AM »

Percival,

I salute you for your contribution and willingness to help the fight we all are so good at complaining about ;)

I am concerned that that they talk to urologists with a keen interest and expertise rather than the typical urologist that according to Levine's survey, suffer from serious misinformation.  We do not want to promote the the concept of "Take vitamin E and you have a 50% chance of improvement"

What is your assessment of the urologists you provided, and do we need to dig deeper, maybe even contacting some solid experts in the hope they would help?
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percival

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Re: Raw TV in the UK
« Reply #7 on: September 26, 2006, 06:17:04 PM »

Hawk
Yes, I see what you mean about urologists. However, I have since learned that  the lady urologist who operated on me 5 years ago has now retired. She was a very good surgeon and had a good understanding of Peyronies Disease. The other guy I saw 20 years ago was indeed a Vitamin E fan, but his name still appears in Peyronies Disease circles so I hope that he is now up to date on the subject. (Vitamin E for 2 years did nothing for me)
Zander had been given the information (recently) from someone in the medical profession that Peyronies Disease can be cured with Potaba. I have personal experience of this having taken it for 18 months (12g/day) in the early stages of the disease. It was useless:  it did not affect the initial plaque and it also allowed further plaque to develop at a new site. It tasted like a lab bench and each dose (3g, 4x per day) made me a bit queasy. Luckily my stomach was  strong enough to keep it down!
I think that Zander has already learned that Peyronies Disease is a complex subject with many conflicting opinions, and I hope that with the help of this site he can distil out the essence of the situation.
Regards
Percival
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ComeBacKid

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Re: Percival
« Reply #8 on: October 09, 2006, 10:42:56 PM »

I applaud your efforts on taking some action, a simple phone call to get some people into action, we need more people like you just volunteering small amounts of time which can lead to great things.  We are underachieving in the Peyronies Disease awarness arena and must do a better job.  This website is great, our forum is great with awesome information and members, but we must get the message out, and draw more members.

ComeBackid
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Liam

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Raw TV in the UK
« Reply #9 on: October 10, 2006, 06:09:29 AM »

I think this is a wonderful opportunity and have to give Hawk an "attaboy" in the way he responded.

Now a little humor.  Being steeped in southern culture, I must admit my exposure to wrestling.  Everytime I see RAW....well....you know.  Plus there used to be a wrestler named Hawk (half of THE ROAD WARRIORS).  I get a bit of a chuckle.  OK  OK  I know. Simple things please simple minds.  :)

Praying for good exposure,
Liam
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Larry H

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Re: Raw TV in the UK/Media Contact
« Reply #10 on: October 10, 2006, 01:55:06 PM »

It has been discussed here many times that the Peyronies Disease patient himself is the greatest roadblock to Peyronie's Disease awareness. Because of his reluctance to acknowledge his condition to the outside world he continues to foster the belief that Peyronies Disease is a very rare condition of little consequence.

Any of us who are fortunate enough to be in a position to advise any media person or organization should clearly explain this fact, and emphasize that this part of the story should be told and made clear. It must be driven home to all Peyronies Disease patients that the concealment of their disease hurts the entire campaign for greater awareness and improved treatments. It's a core issue that needs to be clearly explained in any public discussion of Peyronie's.

Larry
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tell me more

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Re: Raw TV in the UK
« Reply #11 on: April 03, 2007, 06:10:01 AM »

Hello Gentlemen,

My name is Jonathan Davies and I've taken over the Peyronies project at RawTV from Zander (who is now in travelling in Peru).

Apologies for our not getting back to you all sooner. We're still very interested in taking this concept further, but unfortunately Zander is now of on his travels in the depths of the rainforest, so is rather out of reach!

If someone in the UK is willing to bring me up to speed, I'd be most grateful. I have of course done web-based research, but speaking to one of your good selves would be most welcome. Sorry if this is re-treading old ground but, as I say, we're still most keen to get this programme off the ground.

Look forward to hearing from you,
Best wishes,
Jonathan
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Re: Raw TV in the UK
« Reply #12 on: April 03, 2007, 10:55:45 AM »

my contact detail are
[email protected]
From the Uk: 020 7284 6882
From abroad: 00 44 20 7284 6882

Cheers,
Jonathan
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percival

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Re: Raw TV in the UK
« Reply #13 on: April 06, 2007, 09:19:07 AM »

Jonathan,
Following our telephone discussion, I am pleased to see your post here. There is a lot of excellent information on this site (without commercial bias). However, it might not be too easy for you to find your way around it initially so I request that one or two senior members here point out to you the most relevant posts and threads.
I think that a well-made documentary which will raise public awareness of Peyronies Disease is an important step in our search for a cure.
Please feel free to phone me if you want further help.
Good luck with the project.
Percival
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Hawk

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Re: Jonahan
« Reply #14 on: April 06, 2007, 05:10:33 PM »

Jonathan,

While I am not is the UK, I want to assure you that I stand ready to assist you in any way I can.  Feel free to contact me by PM if there is anything the PDS can do. This includes survey information, help with research, encouraging support from our UK members and anything else that you think may help.
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tell me more

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Re: Raw TV in the UK
« Reply #15 on: April 16, 2007, 07:27:26 AM »

Hawk - that's most kind of you, thank you very much indeed. Percival has already been incredibly candid and helpful to me, and I'd also like to thank him for that too.

We're still in the development stage - nothing commissioned as of yet - so I don't want to raise premature expectations on your part (these sorts of things seem to take ages to get off the ground!). However, that said, we do feel that this is an important film to make and - if this is to happen - then it's people like your goodselves who will be instrumental to this process.

I fully appreciate that there is a great deal of social stigma attached to disorders like Peyronie's (one of the things that our programme would aim to break down), so it will take a lot of courage for someone to take part. We're not at the stage of looking for participants yet, but keeping in touch through this forum is most welcome.

If anyone reading this would like to get in touch with me to tell me about their own experiences I'd be most grateful to chat with you. My contact details are in an earlier post in this topic. If you would prefer I call you (expensive international phone calls etc), then do email me your number and I'll get back to you.

Thanks again guys,
Best wishes,
J
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Re: Raw TV in the UK
« Reply #16 on: April 16, 2007, 07:28:53 AM »

ps - contact with UK-based men (or their partners) would be most welcome.

J
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Re: Raw TV in the UK
« Reply #17 on: April 16, 2007, 07:31:34 AM »

Also, just to say, I've been in touch with Christine Evans, a retired urologist who's been fantastic. I've tried to contact Mr David Ralph, but to no avail so far. If anyone in the UK has a helpful medical contact I could liaise with that would be great. I'll stop posting now!

Best,
J
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penguin

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Re: Raw TV in the UK
« Reply #18 on: April 18, 2007, 06:44:50 PM »

J,
 I'm UK based and have had this condition for about 6 months.. so far have had very little constructive help from the NHS.. Quite happy to talk, though am still at the early stages of working it all out and looking for a solution

Cheers, Penguin
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BLBC

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Re: Raw TV in the UK
« Reply #19 on: June 29, 2007, 03:30:20 PM »

Jonathan Thank for picking up the ball from Zander! Being a documentary junkie and would love to see this followed through to fruition! Could you please give us an update of the progress on this project?

If you’re interested in a woman’s prospective it would be my pleasure to give you a call. I’m oh so ever aware of the time differences as my daughter currently resides in England as well as most of my family.

I’ll additionally send this message via email.
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ComeBacKid

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Raw TV in the uk update?
« Reply #20 on: August 13, 2009, 01:51:28 AM »

Anyone know what happened with this project?

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newguy

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Re: Raw TV in the uk update?
« Reply #21 on: August 17, 2009, 01:24:10 AM »

Anyone know what happened with this project?



Maybe it didn't get off the ground? Unless they produced the channel 4 segment but I doubt it:  http://www.channel4embarrassingillnesses.com/video/consultations/consultation-peyronie-s-disease/ It appears that they produce entire shows, and I don't really see anything here that fits the bill: http://rawtelevision.co.uk/website/category/productions/2009/

Does anybody have more info. It could have been that they couldn't get enough men to be frank about the condition, or perhaps that they decided to persue other projects.

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Hawk

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Re: Raw TV in the UK
« Reply #22 on: August 17, 2009, 05:45:12 AM »

I am going back to check may huge volume of email to jog my memory.  I did have several exchanges with the producer and they did make contact with a member or two.  I also referred them to some Urologists so it definitely progressed to a point.
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scotty_r

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4OD - Embarrassing Bodies - Peyronies Case
« Reply #23 on: February 04, 2010, 04:19:40 AM »

Hi guys

incase u didnt see it, thought it might be worth a post..

''Dr Christian meets a man with a bent penis which needs straightening out''

On the channel 4 webside (channel4.com), under 4OD, Embarrasing Bodies..

Check it out, a guy undergoes the nesbit procedure to aid towards straightening his sevear case of peyronies.
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newguy

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Re: 4OD - Embarrassing Bodies - Peyronies Case
« Reply #24 on: October 17, 2010, 04:35:24 PM »

Hi guys

incase u didnt see it, thought it might be worth a post..

''Dr Christian meets a man with a bent penis which needs straightening out''

On the channel 4 webside (channel4.com), under 4OD, Embarrasing Bodies..

Check it out, a guy undergoes the nesbit procedure to aid towards straightening his sevear case of peyronies.

The link, for those interested:  http://www.channel4embarrassingillnesses.com/video/consultations/consultation-peyronie-s-disease/

The show is quite popular in the UK. I think it's great that a programme centers of problems deemed to be embarrassing. It's not done in a sensationalised fashion either. More matter of fact, and informing people that such problems are more common than you'd think.
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tod

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Re: Raw TV in the UK
« Reply #25 on: March 16, 2011, 09:53:27 PM »

I have peyronies.... Lump appeared about four months ago slowly getting bigger and penis bending towards stomach presently 15 - 20 degrees. Its changed twice since onset of lump....

Pain in erections seem to have eased in last six weeks or so, although last change in bend was just two weeks ago.

Yes I'm worried but feel if it gets bad enough I can have a nesbits and off I go again ! (Life must go on).....

Wife very understanding and supportive. I'm 47. Fit as a butchers dog. Have years of active sex ahead of me and I want to enjoy it.

Any support or advice you can offer would be most welcomed....

I'm seeing a specialist just next week....
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Worried Guy

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Re: Raw TV in the UK
« Reply #26 on: March 17, 2011, 04:22:03 AM »

Peyronies was on Embarrasing Bodies again last week.  The guy had Dupuytren's contracture and had surgery to fix it and was very happy.  These guys have large penises to start with and don't mind if they lose a bit. 
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Re: Raw TV in the UK
« Reply #27 on: March 17, 2011, 12:10:00 PM »

I was really pleased that they decided to cover peyronie's disease for a second time. This time around it was a much longer, more detailed segment too. Millions of people watch the show, so it will make a real difference. I added a peyronie's disease videos page here, showing this new video, as well as the previous one from a couple of years back. I'm not sure if the videos are viewable outside of the the UK, but hopefully they are.
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Re: Raw TV in the UK
« Reply #28 on: March 19, 2011, 10:25:16 AM »

Can someone let me know if the vid is viewable outside of the UK? If it isn't I'll try to find a way to download it and share it. I'm not sure how to do that, but I'd imagine that it's possible.
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fubar

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Re: Raw TV in the UK
« Reply #29 on: March 19, 2011, 01:26:48 PM »

Newguy

Just watched the video on my phone,  thanks.Now I know what the surgery entails.Pretty hard thing to watch for the squeamish. I made it through with no problems.

Fubar
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newguy

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Re: Raw TV in the UK
« Reply #30 on: March 19, 2011, 03:21:39 PM »

I agree, not the prettiest sight in the world, but then surgery rarely is :). Let's hope they cover it again in future. It's good to see a popular medical programme covering peyronie's disease.
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ComeBacKid

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Re: Raw TV in the UK
« Reply #31 on: March 20, 2011, 01:47:04 AM »

Not a pretty sight but the truth, and what really happens!  Its good exposure and awareness, just getting the word out there can't hurt us.  Remember Erectile Dysfunction used to be an untalked about thing, and now you see viagara commercials on TV.  Peyronies is a serious disease that does serious emotional harm to people, I know cause I've talked to people who are emotionally in shambles and thinking of hurting themselves on this forum in the past.  I'm happy as well to see another month of what will be well over 100 members.  Our growth for this year should be outstanding, keep up the hard work everyone, and keep advocating on behalf of our members and sufferers around the world in whatever way you can, the more ways we outreach, whether letters, or videos, webpages, or talking to people makes for a good diversified approach.

Comebackid
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