The Ekbom Syndrome Association is dedicated to helping people who suffer with Restless Legs Syndrome, also known as Ekbom Syndrome. All but one of the committee suffer with Restless Legs Syndrome which is why we understand how you feel and we are here to support you. The association exists to provide the best knowledge and advice that we have on Restless Legs Syndrome and we are just a phone call away when you need to talk to someone, just an e-mail away when you want to reach us. We know what life can be like living with Restless Legs Syndrome because we live with it ourselves. That is why we understand and that is what we do best. You can help our efforts to help others suffering from Restless Legs Syndrome by joining our group and adding your experiences to our growing fund of knowledge; you’ll find a membership form in the RLS:UK-ESA overview section of this website
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RESEARCH PROJECT - YOU COULD BE A PART OF THIS!Researchers at the London College of Osteopathic Medicine in Marylebone, NW1, are planning a trial of a manipulative treatment for RLS following on promising work a few years ago when twenty people, recruited through this web-site, were treated by the method, most reporting a significant improvement which continued for long after the manipulation course ceased. The researchers need RLS sufferers to work on - if you are interested in being part of this potentially breakthrough treatment method, visit the RESEARCH PROJECT page in the "About RLS" section of this site. Link to the RESEARCH PROJECT page
| Talking to the drug manufacturerCo-ordinator Bev Finn tells it as it is
| Dear MembersOn 21st May I was invited by the pharmaceutical group of UCB to give a brief talk to the staff on how life is affected when living with Restless Leg Syndrome.
I was made very welcome by the team and after I had finished presenting my talk we had 10 minutes of question time to clarify some of the points I had made. You can see by the picture that we experienced a really good day together. Although the team have a good idea of what RLS is like to live with, only when you have a person who suffers with this condition can you get the point across as to how your life can be affected and also your family life. I do not need to remind any of you how this feels.
Hopefully the product UCB have produced will encourage the GPs to help more people who suffer with this life changing condition. As most of you will know there is so much information regarding Restless Leg Syndrome on the website now it still amazes me that some, I stress some, doctors still are unable to help some of our members.
Although it is only June I would like to encourage as many of you as possible to attend our General Meeting on September 5th at the YMCA building 111-112 Great Russell Street in London. We will be hosting at least two guest speakers and maybe three.
So please show your support and write to me or e-mail by the end of July so we may know how many people will be attending.
Nearer the time of the meeting I will put more details onto our website and for those of you attending I can also supply a map upon request.
View details of venue and times for the Annual General Meeting Our website now includes an updated "About RLS" section with material compiled by our medical advisor, Professor K. Ray Chaudhuri, giving the latest medical thinking about the condition. Visitors may find the "Patient Information Sheet" of particular interest for its clear and concise breakdown of the problem, its possible causes and possible treatments. Best wishes,Beverley Finn 
We met at the Beaumont Estate conference rooms at Runnymede
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Meetings register
Dear Members, Following a recent experience where it proved to be very difficult to find enough members to form a group for a small gathering, we would like to compile a register of all members who would be interested in attending future RLS gatherings.
The meetings concerned were in London and Birmingham and not all members wanted to travel in the evenings. However, these gatherings are covered by a payment to the member as well as travel expense, while our support group will also receive payment for helping the agencies who need your input on living with RLS.
These opportunities can be put to me at any given time, and I would like to ask for your help in this matter. I would ask anyone interested in attending such meetings to please contact me by mail or e-mail with your name, address and phone number if possible plus your membership number, so that when these opportunities arise I can organise things much more quickly.
I look forward to a good response.
Thank you Beverley |
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