Meige syndrome: Rosa Alarcón, the Barcelona councilor who reveals a rare disease on Tik Tok | Catalonia
It has taken four years to have a diagnosis. It occurs in minority, rare diseases -“or orphans”, he points out-, like the one he suffers from. It is Meige’s Syndrome, a neurological alteration that affects the movement of the muscles of the neck, the tongue or, in the case of Rosa Alarcón, the eyes: her eyelids close. It can be at any time, for a few seconds, minutes, hours or a whole day. Alarcón is a socialist councilor in the Barcelona City Council and has decided to publicize the disease with videos that she publishes on tik tok. He tells what the disease consists of, how it turned out for him, how he manages to read, work, or visit an exhibition. The syndrome affects one in 500,000 people. Alarcón estimates that in Catalonia there are 14 or 15 affected.
He summarizes his minute and vital result as follows: “I’m strong. I had two options: to have sunk and go home; or wonder whether or not I had the strength to continue.” “Since I had them, because it is the objective that I can move on, I will do it with the objective of explaining what is happening to me,” he says. It is nine in the morning on a Thursday and he walks down the steep streets of his neighborhood, in the district of Horta-Guinardó (of which he is a councilor), to go to the Town Hall.
For a few weeks he has been carrying a cane: “It gives me a lot of security, especially when facing others. I used to lose my sight in the middle of a zebra crossing and it scared me a lot. With the cane, people identify that perhaps I don’t see”. She is surprised “at how friendly people are and how they ask you if you need help, and also how accessible Barcelona is”. “Although when we see that we are not aware of what can be bothersome, if you do not see, a blackboard on the sidewalk or how dangerous tree pits can be.” She has fallen several times. From her house to the subway there are 24 electricity poles on the narrow sidewalks, the old wooden ones. Curiously, obstacles in public spaces were already one of her obsessions when she served as Councilor for Mobility and paid special attention to pedestrians.
“The good thing about having made public what is happening to me is that three other women have contacted me. In fact, I can now call them friends, we are preparing a meeting in October because one of them is from Madrid”. There are no associations of affected people with whom to share, she regrets. Meige syndrome affects more women and from 50 years. Alarcón has gotten used to almost always wearing sunglasses, the light bothers him a lot and intensifies because the closing of his eyelids. He has a visit pending at ONCE. Because the symptoms that he has fit what is technically called functional blindness. “It’s not that I lose some vision: mine is to go from seeing a hundred to seeing zero. In an instant”.
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It has not been easy to reach the strength that you now express. “I had to go through a duel. Stop and think, because the disease caused me a lot of anguish. And be patient.” Alarcón has a reputation for being executive and decisive. For years she was the chief of staff of the mayor of L’Hospitalet, Núria Marín. And the job of councilor is not one of those that give respite. It has not been easy, she lists, assuming that she cannot “read, work on the computer, watch TV or drive, which greatly affects autonomy.” “Luckily, technology is wonderful: audiobooks, audio description if a series interests me a lot, WhatsApp audios, apps to get around the city.” And Siri, the voice assistant. Siri, what time is it? Siri, call such. Siri, open such app. Siri, call a taxi.”
Alarcón recounts in other words how, used to caring, now she needs care. “In addition to slowing down, I have had to learn to depend. Because there are things I can’t do. But the good thing is that she discovered that others also like to care and help, ”he celebrates. Last summer she did a trekking as a family and she is moved when she remembers how her children accompanied her and explained to her when her eyes closed. She has nothing but gratitude also towards whom she calls her “seeing eye husband”. “The accompaniment is being brutal”, applause.
She has also felt completely supported by her colleagues in her most direct team and in the socialist municipal group led by Jaume Collboni and which governs in coalition with the commons of Ada Colau. When she stopped, she says, she wondered if it made sense to continue in politics. “I wonder what I can contribute. I don’t have the same abilities, but I do have others. I can bring sensitivity to politics,” she concludes.
Meige Syndrome has no cure, but there are treatments that help. Like the Botox they inject every four months. “It is very noticeable because it paralyzes the muscles and the eyelids do not close as much.” He touches her one of these days and she’s already waiting for it.
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