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The European Medicines Agency is committed to working with its stakeholders and in this video you can hear patient and healthcare professional representatives talk about how important it is to ensure your voice is added to the regulatory dialogue.
A new report from the European Brain Council reveals poor diagnosis and treatment of Restless Legs Syndrome which makes it one of the most costly neurological disorders in Europe.
Restless Legs Syndrome (RLS) is a serious neurological disorder which has a high prevalence but is very often not recognized or even diagnosed as a disease, leading to delayed diagnosis and/or wrong treatment. This, in turn, brings unnecessary suffering to patients, a significant cost to healthcare budgets in Europe and costs to wider society. Frequently, RLS is not diagnosed due to lack of knowledge among healthcare professionals, and patients are left with no option but to suffer. Equally concerning is the frequency of misdiagnosis, where patients are prescribed incorrect and inappropriate therapies.
The Value of Treatment for Brain Disorders in Europe study, conducted by the European Brain Council (EBC), the European Academy of Neurology (EAN), the European RLS Patients Alliance (EARLS) and the European RLS Study Group (EURLSSG), in consultation with a team of researchers and experts from the London School of Economics, discovered that the treatment gap for RLS is very high. The total cost of poor diagnosis and treatment of RLS in the countries analysed (Germany, Italy and France) is significantly higher than the combined cost of Parkinson’s disease, Multiple Sclerosis and Epilepsy in these countries, partially due to the high prevalence of RLS.
The report highlights the importance of early detection and intervention, and the urgent need for proper education of healthcare professionals about RLS. The report also highlights the need for research into the cause(s) of RLS and for new treatment pathways to be identified to reduce patient suffering.
The European Union spends just over three euro per year, per patient, on brain research, and access to treatment in many member states is getting worse, not better. According to an analysis carried on in 2010, neurological and mental disorders affect 165 million Europeans, with an overall cost of about €800 billion per ar. The Value of Treatment for Brain disorders in Europe study covered a range of mental and neurological disorders among which Schizophrenia, Alzheimer’s disease, Headache, Multiple Sclerosis, Normal Pressure Hydrocephalus, Stroke, Parkinson’s disease, Epilepsy and Restless Legs Syndrome, and highlighted the full cost of unmet healthcare needs, recommending new investment in research, earlier detections and interventions and better treatment for neurological disorders.
Visit the European Brain Council website for more information
Restless legs syndrome (RLS) augmentation is a formidable foe. It describes a not-uncommon phenomenon in which—after weeks, months, or years of a patient’s RLS (also known by the newer name of Willis-Ekbom disease) being well controlled by a dopamine drug—the symptoms become more intense, take less time to occur when at rest, manifest earlier in the day, return more quickly after taking therapeutic medication, and may spread to other parts of the body.
This article, written by Dr. Mark Buchfuhrer, is one of the best we have read!
http://www.sleepreviewmag.com/2015/02/allaying-augmentation/
"When I'm trying to use my laptop for work it keeps making miss-spell things, so when I'm on the train if there is space I put it on the seat next to me.
"I get it more at work when my brain is working the most, it annoys me because sometimes it's embarrassing."
Amanda Hume, from Braintree, watched the programme which aired on Tuesday, April 4.
RESTLESS leg syndrome is affecting more people than we think.
Halstead residents who suffer from the syndrome, also known at Willis-Ekbom disease, have spoken out about the irresistible urge to move their legs.
What is restless leg syndrome, what are the causes and is there a treatment? All you need to know.
Around one in 10 people experience restless leg syndrome at some point during their life.
The purpose of this online survey is to gather information from women suffering from Restless Legs Syndrome (RLS) during pregnancy (current or past pregnancy) that will help us shape an intervention to help them reduce their symptoms and improve their quality of life during and after pregnancy.
RLS affects approximately one in three pregnant women in western countries, with a negative impact on sleep and quality of life. It is also linked to postpartum depression which can have harmful consequences for both mother and child.
This project aims to support the development of a new research application and to lead to the acquisition of data that could help us improve the management of RLS in a population for which the use of pharmacological agents should be avoided.
Your participation in this online survey is voluntary and anonymous. In order to participate, you need to read and click the consent button.
Findings from the study will be reported, disseminated and made available to the participants via the RLS-UK website and social media platforms linked to the project. It is intended that this work will be published in a peer-reviewed journal, however key findings will be made available to participants regardless of publication through the RLS-UK charity's website and Facebook page.
To participate in this anonymous survey please click on the link below:
Did you see the RLS programme on Channel 5? Perhaps you just found us and you're looking for more information about RLS.
If so and you are visiting our website for the first time, here are some things which might help...
Periodic Limb Movement Disorder
You may recall in our recent newsletters that we referred to a documentary which was being produced about RLS. We would like to thank those of you who offered to participate in this documentary and can now confirm, with great pleasure, that the programme will be televised on Channel 5 next Tuesday, 4th April at 10pm. It will also be available to view on catch-up, on My5 https://www.my5.tv/. Keep an eye out for promotions for the programme on Channel 5!
This is a huge milestone for our charity and for our work to raise awareness of RLS. It will be the first RLS documentary ever produced and we are extremely grateful to Icon Films, who produced the programme, for what should be a fair, accurate representation of RLS and how it affects those living with it.
Be sure to tell your friends and family about the programme - it may be a great opportunity for them to learn about what you go through every day!
We have been working with a well known London hospital to develop new patient information leaflets specific to RLS medications.
Read More
We are very happy to announce that our new website is now live...
Read MoreThere are several chemicals that are thought to be associated with the development and symptoms of RLS...
Read MoreOver 80% of people with Restless Legs Syndrome also have a condition that is known as Periodic Limb Movements (PLM).
Read MoreYour regular online shop could raise money for people affected by RLS & PLMD without costing you an extra penny!
Read More
Our 2016 Annual General Meeting (AGM) will be held in London on Saturday, 3rd September.
Read MoreMarisa first shared her story in 2012 - I have had RLS since I was 19 years old and my mother and gran had it too.
Read MoreRLS-UK/Ekbom Syndrome Association is a registered charity in England and Wales (1140744)