When a friend of a friend (who by the way also became my own friend) received the diagnosis of young-onset Parkinson’s, and she herself began to share her experience, I realized that I really knew absolutely nothing about the disease, and much less about the disease in young women. Parkinson’s is a degenerative disease affecting the nervous system and does not have a clear cause. More than ten million people live with Parkinson’s around the world, and according to the Parkinson’s Foundation, 4% of those affected are diagnosed before the age of 50: this is what is called young-onset Parkinson’s and appears between 21 and 45 years of age.
Sabela Avión, a translator from Vigo and an official at the United Nations in New York, was diagnosed in 2016, when she was 38 years old. And from that moment, and through the media and her incandescent energy, she helps us to learn and reflect about the disease on a day-to-day basis. In 2021, because of Paqui Ruiz’s initiative, the association Con P de párkinson (With P like Parkinson) where Sabela is the vice president, defines itself as «a movement of young women with Parkinson’s disease, united to share our experiences and be heard.» An association that purports, among other things, «to promote the focus of gender in scientific investigations,» «collect inspiring testimonies,» and «share solutions and resources.» Without a doubt, Con P de párkinson is a living example of the power of collaboration to «make visible the invisible» and a different way of understanding activism, but it is also an important reminder about what it means to know other people’s lives from a sense of empathy and humanity.