Simone Ruellan is not losing her temper. A few weeks ago his older brother died in a palliative care unit in Normandy. “He was 90 years old, two terminal cancers, she says with a lump in her throat. He could barely speak. We knew what awaited him, but not that he was going to suffer so much. When I visited him, he was flailing his legs, writhing all over the place and trying to massage them. I immediately understood. I talked about restless leg syndrome to nurses who were amazed. They had never heard of this disease and even less of the suffering it could cause. The doctors in charge didn’t seem to know much more about it…” A reality that revolts her.
→ READ. Narrative medicine, listening better to treat better
However, what his bedridden brother suffered without being able to express it, millions of people experience it on a daily basis. These sensations of stings, burning, tingling, even electric shocks in the legs and sometimes in the upper limbs which give an irrepressible urge to move when you are lying or sitting, when you try to rest, to sleep , are part of their daily lives. These are some of the symptoms of so-called Willis-Ekbom disease, or restless leg syndrome. It would affect 10% of the French population, including 3% severely. We do not die from it, but there is no known effective lasting treatment and no hope of cure today.
An “imperative need to move”
Simone Ruellan, 77, has always lived with this pathology. “My first memories go back to my childhood, she says moved. My parents, Breton farmers, had subscribed me to Fripounet and Marisette. I loved to read at night before sleeping, but I couldn’t, because I already had this urge to move. He wasn’t as crippling as he is today, but the embarrassment was very real. »
The situation becomes unmanageable as you approach your forties. She begins to no longer sleep at night, one of the consequences of the disease. “I worked at the town hall of Paris, continues Simone. I remember pacing around the apartment where we lived with our two daughters. To kill time, I read while walking, never losing sight of the clock… I dreaded the three o’clock mark after which I knew I wouldn’t sleep. »
Sometimes he has dark thoughts “looking at the medicine box”, she confides modestly. “When I got there, I went around the Paris ring road. Sitting in my car, I no longer felt what specialists call impatience. »
Simone Ruellan put a name to this disease in the early 2000s, discovering the France-Ekbom association. She joined in 2002 and became a correspondent in 2004. On retirement, back in her native Côtes-d’Armor, she took on more and more responsibilities. She is now vice-president, in charge of the management of regional correspondents.
“It’s unbearable to see that our disease does not exist”
This position allows him to take the measure of the problem. And in particular that of the management of this disease which mainly affects women. “It destroys your sleep, cuts you off from all social life, does she sum up. For years I have been avoiding evenings with friends or family, the cinema, the theatre, plane or train travel…”
If there are drugs that help support this disease, their effect is often limited in time. “Doses often have to be increased with inevitable side effects”, specifies Simone Ruellan, who underlines that these drugs however saved her life. So when she reads articles in trade journals calling for them to be avoided in the name of risk benefit, her blood just boils. And new fights begin for the association with this feeling that it will be long and full of pitfalls before this disease is taken seriously.
In the meantime, Simone is counting on a manifesto she wrote at the beginning of the year to raise awareness among caregivers and medical authorities. “The idea was born out of frustration. That of hearing patients complain all day long about the way they are received by many general practitioners convinced that this disease is in our heads. That it was created to sell drugs. A neurologist once told a member about “the latest fashionable gadget”. It’s unbearable to see that our disease does not exist when it has been identified since the XVIIand century. »
“The immense dancer that was Rudolph Nureyev”
“As a child, I had a dream, impossible to achieve in my countryside: to do classical dance. Life took me to Paris to work and as soon as I arrived, I was able, not to realize my dream, but to pursue it differently. The Paris Opera offered me the most beautiful show given by the immense dancer that was Rudolph Nureyev in his interpretation of the Swan Lake with Sylvie Guillem at the Opera. If he were still alive today, there is no doubt that he would still be able to leave his country, Russia, as he did in 1961, slipping away from his KGB guards. For my greatest happiness. »