Volunteers required please read

Hi Guys,

I’ve been in contact with a journalist who is going to run a piece on PFS (UK) he would like a selection of sufferers/view points stories! He also wants a mixed bag in terms of exposure, symptoms and damage. Not necessarily just severe. If included you can remain anonymous if you so wish.

Please PM with your name and telephone contact and I will in turn pass on your details. (Summary of exposure, main sides and damage would be good, though not necessary as the journalist can ask for these when he makes contact).

The important thing is we step up.

Let’s get behind this please.

Any opportunity to be heard should not be wasted.

I don’t imagine being outside of the UK will be a problem.

Regards

3 Likes

Aup mate, I may be interested to share my experiences if its anonymous. Who does the journalist work for?

3 Likes

A national so a good readership / coverage @Gord

3 Likes

This is absolutely a fantastic move ! I think this will be great for the cause and in a paper that’s read by a lot of people .

I would consider being involved however My biggest concern is having this disease assigned to my identity in some way , which I wouldn’t want .
I know that sounds weird but I’m sure you get what I mean .
I wouldn’t want to be associated as the “PFS “ guy or ‘the guy with a dysfunctional cock’ etc etc by the public !

@Forwardsnotbackwards you can remain anonymous he asked about the weight gain side. While I had that for a few years I’ve gone the other way but would be good to have your input with u having that. I expect it will be a few lines from each in reality to support a summary write up of the disease. Though I do respect your decision

what you waiting for? You laying in your bed and waiting for cure? reading forums gonna cure you? sending emails not gonna change anything, if you can’t let the others hear you nothing will be changed. Please push to medias, or protest outside of mercks, things like that gonna help us. Not forums!

1 Like

I would like to make use of this oppurtunity, it’s chances like this that will help us.
I PM’ed you :wink:

1 Like