RLS Awareness Day: I’ve spent today... - Restless Legs Syn...

Restless Legs Syndrome

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RLS Awareness Day

Joolsg profile image
22 Replies

I’ve spent today tweeting about RLS as it’s RLS awareness Day.

Is there any way we can find famous people who suffer with RLS and ask them to do podcasts for RLS UK?

I was watching a documentary on Ingmar Bergman last night & he suffered from RLS and so did the American interviewer, Dick Cavett. Apparently Philip Schofield’s mother also has it.

I’d be happy to try contacting any famous people to see if they could help.

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Joolsg profile image
Joolsg
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22 Replies
Alyson66 profile image
Alyson66

Twitter x

Jools i heard Philip Schofield mention he has RLS, on the Morning programme a few years ago, when they were doing a small piece about RLS, when he mentioned it, he almost dismissed it as nothing, i just thought he only had it mildly so wasnt a big thing for him. I have contacted that programme a couple of times in the past trying to get them to do a bigger piece on RLS, but with no luck, thought then Philip might open up more about his.

in reply to

Oh and it has been mentioned before on here of any famous people who could have RLS, nightdancer had some names she posted can remember who they were now . :)

Joolsg profile image
Joolsg in reply to

He surely can't have severe RLS or he couldn't do that job and go out on the town drinking ( which he seems to do quite often). I definitely think it's a case of "who you know" to get past the security people. I wonder if anyone knows any big wigs at BBC or ITV who get agree to do segments about RLS. I know someone in PR at the BBC so I will ask her and see what she says.

in reply to Joolsg

No he certainly cant have severe RLS, but as his mother has it then a good chance he does too. Alcohol doesnt effect everyone who has RLS and if he does have it and just very mildly then the alcohol probably not a trigger for him. I used to drink alot when i was younger and i only had very mild RLS, back then, not bad enough to take any meds for it. It slowly progressed over the years, i was still drinking at the age of 50+, but cant now i am much older and my RLS is severe. Would be good if that person at the BBC can help.

TaliT profile image
TaliT

I tried contacting This Morning myself. Didn’t even get a reply.

The disease isn’t taken seriously enough, so will constantly be overlooked.

Did anyone see International RLS Day being discussed anywhere yesterday? Naff all!

I’m fed up of it being disregarded.

Kaarina profile image
KaarinaAdministrator in reply to TaliT

International RLS Day was discussed on the RLS-UK FB Page yesterday. Also here: walkwithlucy.com/

in reply to TaliT

I saw it on RLS-UK fb page and i shared it on my fb page. Also the RLS Foundation had it on their FB page, not easy to see either if you dont have FB, i accept that. I also shared the hide a rock on a FB RLS support group i co-admin , that got some response from some of the members in the group. :)

Seehowyour profile image
Seehowyour

Your right you don't hear about RLS much on the news or with the medical fields. It's like it's taboo to talk about it. Do they think we make this stuff up or what? Getting older sucks! I take care of Mom and Dad and now I have Bursitis in my hip from moving Mom in and out of bed. I'm not going to let pain keep me from doing and being the best I can be! I pray that everyone will find the answers we need to all of health issues.

Kaarina profile image
KaarinaAdministrator in reply to Seehowyour

There have been a couple of articles on RLS in the Daily Telegraph recently. I believe it was Mum007 who kindly posted the links on here.

Seehowyour profile image
Seehowyour in reply to Kaarina

👍

in reply to Seehowyour

Articles do get posted on here when people see them or find them. In the USA, Dr Early a RLS specialist and researcher does alot of work on RLS. As does Dr Buchfuhrer also in the USA and a RLS specialist and has written very good books on RLS.

Seehowyour profile image
Seehowyour in reply to

Do you know what town Dr. Buchfuhrer lives in? I need to read some of his books. Thanks!

in reply to Seehowyour

Stanford , California i believe, You can buy his books on Amazon, you need the most up to date one. Which is what members on here buy.

Seehowyour profile image
Seehowyour in reply to

Thanks Elisse2!

Kaarina profile image
KaarinaAdministrator

For any Dutch people on the forum: this afternoon at 17.00 'Tijd voor Max' on NPO1. Today it is about Restless Legs Syndrome.

LotteM profile image
LotteM in reply to Kaarina

Thanks for posting Kaarina! I missed that, but fortunately I can watch most broadcasts up until 7 days later. Will do.

LotteM profile image
LotteM in reply to LotteM

I watched the piece on Dutch tv of last Tuesday. It was a gp who explained about RLS. And, low and behold, he mentioned several important things: it has a large negative impact on the quality of life due to the interference with sleep; it can be treated with dopamine agonists, BUT is often leads to augmentation (!); it can be caused by other diseases (low iron, Parkinson’s); it is chronic and often people already had it as a child (fidgety). He also quickly dismissed some attempts at jokes about the disease.

However, no other treatments were mentioned.

In sum, not bad. And although it conveyed the seriousness of RLS, it didn’t convey any sense of urgency. On a positive note: any mainstream attention with good information helps.

LotteM profile image
LotteM in reply to LotteM

Some more for the Dutch, Belgians and SAs that read Dutch among us: the website of the broadcasting organization (Max) had the 5 min video AND a written piece about RLS:

maxvandaag.nl/sessies/thema...

in reply to LotteM

Can you give us non speaking Dutch people an idea of the content of the video and written piece..? In other words how good was it. :)

Sara_2611 profile image
Sara_2611

Maybe use Twitter or facebook

Sara_2611 profile image
Sara_2611

I don't know of any celebs who have RLS. As I said earlier maybe try twitter or Facebook Good luck

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