There are countless pathologies called rare. So many, that not a day goes by without us knowing some of them. An example: Meige syndrome. Rosa Alarcón, councilor of the PSC in the Barcelona City Council, is the one who has put it on the table. She has suffered from it for almost four years, although she was diagnosed three years ago. The main symptom you suffer from? Her eyes close without warning. At the end of September, she will leave office due to this ailment.
He remembers well the first day the pathology began to manifest itself. It was just when she was crossing a crosswalk. His eyes closed suddenly, unable to open them, while he was right in the middle of the road. “I just lay there. The cars began to honk at me. I was lucky that a man helped me to finish crossing ”, she tells La Vanguardia. After a while they opened again.
He admits that he was very scared and immediately went to the doctor. They told him not to worry, that it was probably dry eyes. But the situation was getting worse: the symptoms went from being sporadic to continuous. After visiting several ophthalmologists, he ended up at the neurologist, who diagnosed him with Meige syndrome.
This rare, incurable neurological pathology is characterized by rapid blinking or involuntary spasms that cause the eyes to close. Also due to 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 knows of 13 other cases in Spain.
Currently, his eyes close between 30 and 40 times an hour, when in the beginning it happened once a day. “There are certain times of the day when they are less closed to me, like at night. I understand that it is because there is less light, although they still close me”. Each episode usually lasts a few seconds, although once he spent two whole days without being able to open his eyes.
As it is a disease that has no cure, only something can affect its symptoms. She undergoes Botox injections every four months that manage to reduce the episodes a bit. “They have managed to find a dose that works quite well for me. They continue to close me a lot, but not that much.
She is very grateful to ONCE for the resources they have provided. And it is that she suffers from what is known as functional blindness. “Normally, blindness is measured by the degree of vision loss. In my case, I go from 100% to 0% and from 0% to 100% in a second.”
He says that he behaves as if he were "a 100% blind person." On the street she carries a cane, with which, she says, she manages quite well. “At ONCE they have taught me many techniques: from how to iron without vision to cooking and even putting on makeup. Now, if my eyes close while cooking, I can continue with the task”.
On September 28, he will officially leave his post at the Barcelona City Council. He says that continuing to exercise it would require a great effort. “Right now I can't read. Thanks to technology, I have strategies to know the content of the documents that I may have in front of me, but it is very slow. And I am no longer 20 years old, ”he underlines (he is about to turn 60).
Stress also does not help. Quite the opposite. "I have verified it on these holidays, where he had fewer episodes." It was precisely this summer when he decided to leave office. Also because he saw a second symptom appear, jaw tremor. He confesses that he is afraid that his health will worsen for being “brave”.
The hardest of his ailments, he says, is having lost autonomy. “I have had to learn to ask for help, and it has been difficult for me.” Also having to stop doing some activities, like driving. He moves around the city by public transport – “it is very adapted for blind people, there are applications that guide you and they work very well”, he says – but the car gave him autonomy to move around outside the Catalan capital.
As a compulsive reader - "I could read two books a week" -, she asserts that it has also been very difficult for her to stop reading. “I have found a substitute that is working very well for me and that is audiobooks, although at first it was hard for me to get used to it”
She lives with her family, with her husband and one of her children (she has two). Her partner is the one who has assumed the leading role in household chores more now. "We already shared the tasks before, but there are some that I can no longer do."
Although she now has less autonomy, she tries to fend for herself as much as she can. “At home I am autonomous, they can leave me alone. Also, even, I go alone on the street. I walk little by little with the cane, but sure.”
He affirms that the disease, beyond its harshness, has taught him some teaching, such as that it is not "infallible". He also to "empathize more with others and have more patience." He is waiting for the degree of disability that corresponds to him to be recognized as his is a disabling pathology.
After having gone through the grieving process to accept the disease, he asserts that he now feels fine. “I am strong and eager”, she concludes herself.
