Getting more exposure for RLS through the media.

Although I would not appear myself I am thinking about writing to the womens magazines about our ailment. In the health sections they cover numerous illnesses but I cant recall an full page account of RLS. If anyone is less insecure than myself and would be willing to share their experience of this I think it would be a good place to get it more in the public eye. The lack of basic knowledge in the health service of this is ridiculous.

[maddymac]

I would be willing to write to a womens magazine about my experience of RLS

Maddymac

[Carol456]

Hi Blackcurrant,it's been done allready, not as easy as it sound's

[Rubylane25]

I think that is an excellent idea. Also morning radio shows sometimes have guests about those type of things. RLS has been too long not taking the devastating affects seriously, doctors included!

[blokie]

Well said Blackcurrant Bubbles, it's rediculass that on this day of modern medicines RLS is put on the back burner. However when speaking to Jo Public it's surprising how many people suffer from this complaint .

[jimeka]

Great idea, willing to help where I can, jimeka x

[Lindy14]

I agree, I haven't seen a decent article about RLS. That's a very good idea. what about if between us we bombard our favourite magazines and suggest it to them pointing out how we're affected by this condition. Since getting it over 15 years ago I've felt as though I'm possessed when my legs start going during the day when I'm sitting down for any length of time. It didn't help when I visited my GP and she told me to go and find a means of relieving it myself!

The magazine could cover a variety of subjects including:

a) the type of symptoms we get (how they present, when they present)

b) some methods of treatment that don't need a GP's signature

c) how this affects our every day lives

d) how the medication prescribed can affect us and how (un)successful it is

These are just some ideas.

If we give them any suggestions they may be interested enough to use them, after all, it can only help get them more readers!

Please let me know if you are going to try this, I'll contact some I read and keep you informed, but I don't think it matters if we contact the same magazine.

[Bganim1947 in reply to Lindy14]

YES, Lindy 14!!!!!!

[Kaarina Administrator]

Hi everyone,

Did you know that RLS posters can be downloaded from the RLS-UK site rls-uk.org/join-us/4560971951 to help raise awareness of RLS. These can be distributed in your local library, chemists, surgery, hospital, to raise awareness of RLS. I have done this and found people not too keen to take a poster but three were taken, our local day hospital, surgery and a health shop. The local chemist has taken a poster in the past but has a new policy now, no posters other than NHS one.

I appreciate this is not the same as contacting magazines and so on but it is a start. This is definitely the easier option to begin with.

I am all for promoting awareness of RLS but I do not think it is as easy as it may sound.

Perhaps it may be an idea to contact Chair, Daragh Bogan (Mr.) : [e-mail]

Vice-Chair, Rosie Braidley (Mrs.) : [e-mail] if you wish to contact the media.

Kaarina

[Kaarina Administrator]

If any of you use FaceBook then I expect you know there is a RLS-UK FB page which helps promote awareness of RLS. Take a look if you have not done so already.

Kaarina

[Cats2]

I think the problem is even bigger than just making the public aware. I'm amazed at how little certain factions of the medical community know about it. Recently I had hand surgery and the surgeon, although the surgery could have been done under a local, thought a little "twilight sleep" would make it better for me and for the surgeon due to the restless legs. The anesthesiologist tried to override the surgeon's request and refuse anesthesia. Surgery was delayed 30 minutes while they argued it out; the surgeon won. I have read articles since that demonstrate that people with RLS do not tolerate surgery performed only with local because their legs are strapped down, there is stress and they are forced to lie still. Until the medical community understands we are not nuts, I'm not sure we are going to get anywhere.

[Hidden]

Thank you all for your responses. Because of my unawareness of RLS being so widespread, and how devastating it can be I'll admit to being ignorant as to what has been done to raise awareness.

With the exception of the truly ignorant I think there are so many illnesses that the professionals would deem more important than having restless legs that they would rather spend time and what money they have treating those. After all, even when we say restless legs it doesn't sound devastating. I'm not going to die from this. I can't be driven any madder than I already am. And it appears that most, if not all, of you have had it much tougher than me. I have no intention of going gung-ho with this as having morbid depression and anxiety I know I have my limits.

I'm on FB and have that page "liked". I am slowly going through different sites, as it takes several reads for it to sink in. My concentration isn't what it was.

Burble over.

[Kaarina Administrator]

Hi Bubbles,

I have to read some things over a few times for it to really sink in too. My memory/concentration is not what it was! I can tell you that you have RLS much worse than me. To date I have not been on any medication for RLS. I can go a long time without any symptoms but of late I cannot really sit and watch TV comfortably for more than half an hour. I do on the whole sleep OK at the moment though which is a blessing. I have had RLS for years off and on but I would not say mine has got worse with age which is unusual from reading what others say.

Do call in and let us know how you are going on.

Kaarina

[Dollis]

You would think there must be a journalist/columnist out there somewhere who suffers even mildly and might be interested in taking it up. And what better place for them to get a feel for how widespread, misunderstood and devastating an illness it is than by doing some research here on our own forum! How you'd identify someone like though I don't know. I also think RLS/UK already does ongoing work of this kind though, producing Press Releases etc. - and surely a central, co-ordinated approach is best although I'm sure they would be glad to have all the help support they can get with this. And again, surely there are some publicists, PR people among us who could help?

[Daragh]

Thank you all for your contributions towards this discussion.

RLS-UK have written to hundreds of local, regional and national media organisations over the past three years. Few have taken up the offer to work with us. This is often attributed to our membership size or to a perceived lack of appetite from readers.

We have been successful in some cases and have featured in the Daily Mail, Daily Telegraph and a number of magazines. Unfortunately we also featured in the Daily Mirror, which published a horribly cruel piece about one of our members and which ridiculed the condition. We had no editorial control over this and learned some valuable lessons about media engagement, the greatest being that an individual should never, ever engage with a media outlet without doing so through us.

If any if you would like to put yourselves forward for future media pieces, please contact me via email, detailing your name, age and location. I can be contacted at [e-mail]

Thank you

Daragh, Chairperson RLS-UK

[Hidden in reply to Daragh]

Thank you for your this. I wont take this any further. xx

[Carol456]

It was also taken up by an asian paper, that was even more cruel, totally made a mockery of the member, and some of those people in the media are unscrupulous, they dont care about the person involve, it's all about getting sale's, so be warned, dont take everything on face value, newspaper's and magazine's are now interested in the individual involved, but in how much profit they can make from you.

One person left a camera running while they talked to the person about how RLS affected them and their life, unknown to her, filming her, then without her knowledge, he put the video on U Tube, shocking behavior.

[Bganim1947]

I'm a published health care author and began doing research on RLS due to my own horrendous experience with it for years. Started with this site to find help to reverse my symptoms. My neurologist kept increasing my Ropinerole as I experienced more augmentation. I discovered through the folks on this site that was the worse thing to do. I fired him! And began working with my pharmacist and GP to reduce my Ropinerole with the help of Ferrous Bisglycinate—couldn't have done it without that.

I've gotten a great deal of information from the people on this site combined with much research, and now I plan to begin writing articles for health care magazines and eventually a book. You are so right, not only do doctors know little about this condition, those suffering with it are completely uninformed and therefore helpless to help themselves.

We all must get the word out there in any way we can.