There are countless so-called rare pathologies. So many, that not a day goes by without us meeting a new one. An example: Meige syndrome. Rosa Alarcón, PSC councilor at Barcelona City Council, is the one who put it on the table. He has suffered from it for almost four years, but was diagnosed with it three years ago. The main symptom you suffer from? His eyes close without warning. He will leave his position at the end of September due to this illness.
He remembers well the first day when the pathology began to manifest itself. It was just when I was crossing a pedestrian crossing. His eyes suddenly closed, and he could not open them, while he was right in the middle of the road. “I stayed there helpless. I was lucky that a man helped me finish crossing”, he explains to La Vanguardia. He admits that he was very scared and immediately went to the doctor. He was told not to worry, that it was probably dry eyes. But the situation was getting worse: the symptoms went from sporadic to continuous. After visiting several ophthalmologists, he ended up at the neurologist, who diagnosed him with the syndrome.
This neurological pathology, which is rare and has no cure, is characterized by rapid blinking or involuntary spasms that cause the eyes to close. Also for spasms in the tongue and jaw that can make it difficult to speak, chew or swallow. It affects one in 500,000 people, more women than men. In addition to hers, Rosa Alarcón knows of 13 other cases in Spain.
Currently, he closes his eyes between 30 and 40 times an hour, when at first it happened to him once a day. “There are certain times of the day when I’m less closed, like the night.” Each episode usually lasts a few seconds, although he once went two whole days without being able to open his eyes.
Since it is a disease that has no cure, you can only have a little effect on the symptoms. She undergoes botox injections every four months which manage to reduce the episodes slightly. “They continue to shut me down a lot, but not that much.”
She is very grateful to ONCE for the resources they have made available to her. After all, she suffers from what is known as functional blindness. “Blindness is usually measured by the degree of vision loss. In my case, I go from 100% to 0% and from 0% to 100% in a second.” That’s why, he says, he behaves as if he were “a 100% blind person”. He carries a cane on the street and claims to be doing quite well. “At ONCE they taught me many techniques: from how to iron without vision to cooking and even applying make-up. Now if I close my eyes while cooking I can continue with the task”.
On September 28, he will officially leave his position at Barcelona City Council. He says that continuing to exercise it would take a lot of effort. “Right now I can’t read. Thanks to technology, I have strategies to know the content of the documents I may have in front of me, but it is very slow. And I’m no longer 20 years old”, he emphasizes (he’s about to turn 60).
Stress, moreover, does not help. On the contrary “I checked it this holiday, when I had fewer episodes.” It was just this summer when he decided to leave the position. Also because he saw that a second symptom appeared, the jaw tremor. He confesses that he is afraid of getting worse to be “brave”.
Having gone through the grieving process to take on the disease, he says he feels fine. “I am strong and eager”, he concludes.
