Noah Higón Bellver, a Valencian activist who makes rare diseases visible and vindicates public health and investment in research, stars in the new chapter of the podcast Stay for a meal.
This young jurist and political scientist explains in the podcast how she has managed to turn around the suffering associated with the seven rare diseases she suffers from, to try to help those like her who live in uncertainty and lack of understanding of these rare diseases that affect 3 million people in Spain.
He describes how he was affected by losing his hearing when he woke up, against all odds, from an induced coma after sepsis. and what communication is like when you have a cochlear implant as in your case. She explains how she has lived the experience of being between life and death, what her relationship with her parents is like, whose lives she has changed, and reflects on the role of caregivers or the relationship with loneliness, pain, and death.
Higón Bellver talks about his experience with all kinds of health professionals, he defends this way of practicing medicine from empathy and accompaniment despite the fact that most times there are no solutions and the patients are a bit like guinea pigs. “You have to be a bit of a pioneer and leave your life in the hands of those who try to move forward and try. If this improves the lives of others, it will not have been a mistake, it will have been a way of giving back something that I am not going to have but that can help those who come after”.
Regarding medical errors, he affirms that everyone with rare diseases will have errors in their history. "I don't care if you're wrong, because whoever doesn't try isn't wrong, I understand that it's very difficult but tell me 'we've tried, it didn't work out, I'm sorry'. I will never recriminate a failure, but I will do a certain sloppiness after the failure; Get by as you can."
Higón Bellver says that for a long time she has had to be fed intravenously and explains what it meant for her to have a paella again, something she could not do for years. She also explains the treatment she has had in a restaurant where they did not believe her limitations and thought that she wanted to save money, or the importance of savoring and enjoying the social relationships that surround the act of eating. Prejudice and labels, compassion, what he hates or the role of social networks are some of the topics that are addressed in the conversation.
