Hi there,
I was wondering whether anyone had any tips on raising awarness of RSD. I would like to stop more RSD patients being told that it is all in their head, before diagnosis.
I have contacted a local Tv programme near where I live, but we have not got a reply yet.
Please write back with your tips.
Thanks
Alison

"If Hell were a clinical medical condition, it might look something like reflex sympathetic dystrophy or RSD."

Ali,
I've contacted so many places and no response. But that won't make me quit. Next step is to go sit on their doorstep. Good Luck. We need to do something.

Sue K.

I would start with your local newspapers. I have several articles that were put in our local paper. One was about a local woman with RSD and one was about Paula Abdul. I also have one that a DR. put in explaining RSD in a wellness section.

At least if you can get info. into your local paper then it helps make the locals knowlegable about RSD.

Ada

I have contacted many "talk shows", magazines, etc. to try and spread the word. No reply. My philosophy is just that I will not give in. Eventually, there will be one person who will stop and listen and then we may have some coverage. I always think of the 3 monkeys in regards to RSD. People don't want to see, hear or speak of RSD......even my doctors. We must have hope and not give up. Write to everyone you can think of, pursue all angles, we will triumph.

In the UK

Radio 4 has done shows on it - also before RSD UK closed they had alot of media over awareness week. There have been pieces in the Times Sunday magazine, The Mail, In several of the "womens" magazines, an article on Discovery. There is a piece on it on BBC online (2 pieces I think?), The Sun (or some paper like that) has run a piece on it. Several of my friends have been in the paper/ TV/ magazines. My uncle and aunt work for the BBC and they made them do abit on it on Casulty :P. A lot of the local newspapers have run pieces on it. It recieved quite a big show when that quad with RSD whose name has currently escaped me sailed single handedly across the channel and is now planning on sailing around Britain.

The problem is that as RSD UK has shut down it is far harder to get any media awareness going.

It is odd though. I used to think RSD was rare - in my town I know 6 people with it. A girl at my school had it, someone that served me in Marks and Spencers had had it (so recognised from looking at me that I had), a teacher at my school had it, the younger sister of someone in my class had it and a guy I met in physio had it.

Awareness is happening.. it's just that most people recover in a year or so and it doesn't affect enough people seriously to make it well known. I mean in the UK look at the number of doctors that haven't a clue about what it is!!

I was lucky that my GP picked it up in 2 weeks! and that was only because in her practise there are another 2 people with it!

But I have seen drs who have never heard about it. My neurologist has barely heard of it and only knows the 1970s view on it..

Frogga