Marta Almagro has bronchiectasis and spoke at the World Bronchiectasis Conference in Hannover, Germany last month. We asked her about her experience at the conference, and why became an advocate for people with bronchiectasis.
Could you briefly introduce yourself and how you came to get involved in patient advocacy work?
I am 38 years old and from Barcelona. I am an electronics engineer, working as web and social media analyser.
A few years ago I looked for a bronchiectasis patients association in Spain and could not find one.
I told my pulmonologist that we should have one to be able stand up for patients’ rights. She happened to be working on the EMBARC (European Multicentre Bronchiectasis Audit and Research Collaboration) project, so she encouraged me to get involved in the task force on bronchiectasis that ELF was putting together.
You recently spoke at the World Bronchiectasis Conference in Hannover, Germany. Can you tell us about this experience?
It was an amazing experience. I was very nervous, not only because of the fact that I’m not used to talking in front of so many people, but because I had to open my heart and talk about my experiences, some of which are really hard for me. That aside, I was also worried that I would not be up to the task of representing properly all my fellow patients.
But I had the opportunity to share my life, my thoughts and concerns, my experiences, and to be listened to carefully by everyone in the room who gave me their full attention. I had the chance to remind the healthcare professionals and the pharmaceutical companies that we are more than just a disease, and to stand up for all the things I thought they had missed in their analysis.
And I am more than grateful for the response of the audience. They are working really hard to help us and improve our quality of life; they are willing to work with us; and they are thankful to receive our feedback.
Which other bronchiectasis projects are you currently working on?
I am part of the ELF patient advisory group which is developing new European guidelines for bronchiectasis. I am also helping with the production of two educational platforms for healthcare professionals and a patients’ register.
In addition, I am setting up a bronchiectasis and primary ciliary dyskinesia patient organisation here in Spain, and aim for it to become European.
What advice would you give to anyone interested in speaking at a scientific conference about their condition, or working with healthcare professionals on new guidelines for it?
I would tell them to go for it, without any doubt. You are able to learn a lot of things about your conditions and how healthcare professionals have to work.
You also can stand up for the things that you think are important. And, in doing so, you are helping others like you, as well as getting a sense of empowerment regarding your condition.
Find out more about the EMBARC project.
Interested in becoming a patient ambassador? Check out the European Patient Ambassador Programme.
