rls awareness

cornelia · Post by **cornelia** » Sun Dec 12, 2004 9:20 pm

Hi all,

my husband has been to the 5th anniversary of the dutch patients Group, during which he heard of a dr Paul Stillman. When he looked him up in Google he found this aricle, that I want to share:

Corrie

RESEARCH SHOWS HIGH PREVALENCE OF RLS PATIENTS

ARE OFTEN MISDIAGNOSED

New Initiatives Provide Hope for Patients

Paris, France - 7 September 2004 - Distressing research regarding restless legs syndrome (RLS), a potentially debilitating neurological movement disorder that can have a profound negative impact on a person's sleep and quality of life, was presented today at a press briefing during the 8 th Congress of the European Federation of Neurological Societies. Leading experts in the field of Neurology and patient advocates presented data demonstrating that most patients who seek medical advice for RLS are often misdiagnosed and continue to suffer from the often torturous symptoms associated with the condition - uncontrollable urges to move the legs and painful or distressing sensations in the lower limbs. In response to the data, experts showcased initiatives that aim to increase awareness and accurate diagnoses of RLS.

Research Findings Demonstrate Lack of Awareness

Recent findings from the RLS Epidemiology, Symptoms and Treatment (REST) study, the largest and most comprehensive study of the prevalence, burden and diagnosis of RLS across Europe and the U.S., show that most patients who seek medical advice for RLS symptoms are misdiagnosed and continue to suffer from the distressing condition. Of the patients with RLS symptoms surveyed, 81 percent consulted a physician about their symptoms; of those, nearly 75 percent received a diagnosis, but only 8.3 percent were correctly diagnosed with RLS. Those who were misdiagnosed had their symptoms wrongly attributed to such conditions as poor circulation or arthritis.

Investigators of the REST study conclude that a lack of awareness about RLS among the general population likely contributes to the high prevalence of misdiagnosed patients, despite the fact that RLS is common and can be easily diagnosed. While physical examinations and laboratory tests may be used to rule out other conditions, diagnosing RLS relies on the ability of the patient and physician to effectively discuss and identify the underlying cause of the symptoms the patient is experiencing.

"The sensations and pain associated with RLS are difficult for a patient to describe - even more so if the patient is not familiar with RLS," said Dr Paul Stillman, PCP in Sussex, UK and researcher in RLS. "In fact, most patients focus on their inability to sleep when speaking with their physician as opposed to attempting to describe the feelings and sensations in the limbs because they do not associate or link the group of symptoms with their inability to sleep. At the same time, physicians may not probe and ask additional questions that would otherwise allow them to make the link between the sleep disturbance and RLS. In short, familiarity of the condition by physician and patient is needed - a common language to help with diagnosing the condition will accompany the increased knowledge."

European Survey Demonstrates Low Awareness

New results from a European survey confirmed the conclusion of the REST study showing that awareness among the general population about RLS is low. While experts estimate that as many as 10 - 15 percent of the global population suffers from RLS, only 17 percent of the adults in the general population interviewed from five European countries were able to accurately identify any of the symptoms associated with the condition.

New Coalition Forms to Fight Silence

To address the need for an increased understanding of RLS, the International RLS Awareness Coalition has been established to support those who suffer from the potentially debilitating condition. Through ongoing educational efforts in more than 14 countries, the Coalition seeks to improve communication about RLS symptoms between patients and physicians in order to help patients obtain an accurate diagnosis of RLS and find effective ways to manage the condition.

"RLS can be physically debilitating and emotionally draining - even more so for someone who is not aware of what is causing the sleepless nights," said Beverley Yakich , RLS Australia, patient support group Coordinator, and member of the International RLS Awareness Coalition. " While treatments for RLS are being researched, receiving a diagnosis of RLS gave me comfort because I now know I have a real disease, and I can work with my doctor trialling strategies to manage the condition. I value the opportunity to be involved in an organisation that will help other RLS patients achieve this same peace of mind."
Founding member organisations of the International RLS Awareness Coalition include advocate groups from Australia, Austria, Canada, Denmark, England, Finland, France , Germany , T he Netherlands , Italy, New Zealand, Switzerland , Sweden and the United States. In addition to their collaborative effort, each International RLS Awareness Coalition member organisation serves as an independent advocacy group and local resource for those seeking information about RLS. The establishment of the International RLS Awareness Coalition was supported in part by an educational grant by GlaxoSmithKline. Additional information can be obtained at www.rls.org/RLSawareness .

World RLS Awareness Week

Due to low recognition of RLS symptoms and high frequency of patients who remain undiagnosed, the International RLS Awareness Coalition will launch the first ever World RLS Awareness Week 20 - 26 th September. The week provides an opportunity for the Coalition to voice their concerns surrounding the need for increased recognition and understanding of RLS symptoms, including the profound negative impact the condition has on sleep and quality of life. Beginning 20 th September, each Coalition member will make available educational materials that encourage people with RLS symptoms to seek medical advice from a physician and outline ways to improve patient-physician communication. The observance week occurs during the birthday of Karl A. Ekbom, a Swedish Neurologist who, in 1945, first described the term "restless legs syndrome" in detail.

About RLS

Three percent of the population experiences moderately to severely distressing RLS symptoms (at least two to three times per week) and may benefit from treatment. RLS is characterised by an uncontrollable urge to move the legs and painful or distressing sensations in the lower limbs that are sometimes described by patients as creeping, crawling, burning or pulling. These sensations occur during rest, often during the evening or at night. Movement can provide temporary relief. People who suffer from moderate or severe symptoms of the condition (2 - 3 times a week) are most likely to seek medical advice due to the profound impact on their quality of life. Although the primary cause of RLS remains unclear, there is evidence that the cause may be related to abnormalities in the central dopamine system in the brain.

The primary features of RLS are:

The irresistible urge to move the legs along with sensations deep within the legs (and sometimes in the arms). These symptoms have been described by patients as creeping, crawling, burning or pulling.
Worsening of symptoms at rest, particularly at night when lying down. The longer the period of rest, the greater the likelihood that the symptoms will occur and the more severe they are likely to be.
Symptoms can cause real discomfort, affecting sleep, work, travel and other daily activities.
Temporary symptom relief with voluntary movement of the legs. Voluntary movement can provide complete or only partial relief, and typically lasts only as long as the activity continues.
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Rubyslipper · Post by **Rubyslipper** » Sun Dec 12, 2004 10:14 pm

The best thing we can do is make our voices heard. We cannot remain passive either with our doctors or family. We know that what we are going through is not in our heads. We have to get the information where it needs to be. I strongly urge everyone to become well-informed. I have always said that if a doctor dismisses your symptoms or refuses to learn more about RLS, find another doctor. Any doctor that will not admit he doesn't know everything is not one you want to trust your well-being to. There are so many caring, concerned doctors out there, find them. The next thing we need to do is inform the public. Make sure you know what you want to say and that your information is correct. Then tell anyone who will listen about RLS and what you are going through. I am now a support group leader. Luckily we have two newspapers in our small area and they are always looking for newsworthy items. The one just ran a nice article about our support group but even more importantly, about the disorder itself and even put in the website for RLS.org. The other paper will run one after our next meeting. I'm not saying you have to become a support group leader to get the word out. Just use every opportunity available. There has been more awareness in just the past couple of years. But we have a long way to go to be represented as a "real" disorder. It's nice that you shared with us the problems and info you have found elsewhere. Lets' keep up the great work.