A Spanish politician has quit her position over a rare disorder that makes her eyelids close involuntarily, and sometimes stay shut for days, to focus on raising awareness of the condition.
Rosa Alarcón, a Barcelona city councillor who has been involved in local politics for more than 25 years, was diagnosed with Meige syndrome in April 2022, three years after she began experiencing symptoms.
The first moment Ms Alarcón was affected by the condition occurred when she was crossing a street.
“My eyes closed and I couldn’t open them. The cars started honking and I got scared because I didn’t know where to move,” she told El Diario, the digital newspaper.
“Luckily a man yelled at me: ‘Madam, what are you doing?’ He grabbed me and took me to the pavement.”
Told she had dry eyes
Ms Alaracón sought help at a health centre following the incident, where she was told she had dry eyes.
After a more extended episode a few months later in which her eyes stayed shut for 10 days, Ms Alarcón got serious about getting expert medical advice and obtaining a diagnosis.
Meige syndrome is a rare neurological condition that leads to abnormal movement of the eyelids (blepharospasm) and spasms in the jaw and tongue, sometimes also affecting the neck.
Ms Alarcón began to produce TikTok videos to explain the difficulties of coping with her condition, as well as boost awareness and understanding of the day-to-day challenges faced by the visually impaired.
She now has more than 6,000 followers and some of her videos have been viewed around half a million times, including a series in which she explains how to use a white cane and the texture of pavement to learn how to cross the road without sight.
“I thought that, beyond life in politics, TikTok is a way to reach a larger number of people to make the illness more visible,” Ms Alarcón said.
It was a tough decision
After her diagnosis, Ms Alarcón took a five-month break from her work as a councillor on the advice of her doctors. She returned to fight this year’s local election for the Catalan Socialist Party, but said she has had to accept that she needs more time for relaxation than council work allows for.
“It was a tough decision; I was very excited and motivated to carry on at city hall, but I realise I have to stop,” she said.
Ms Alarcón thanked Jaume Collboni, the Barcelona mayor, for his support and having insisted she return to the council after her initial break.
Mr Collboni said that Ms Alarcón had been a “indefatigable public servant”, and he hoped they would continue to coincide “in working for a better city”.