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In this informative capsule, we talk about the importance of effort and resilience in cystic fibrosis with Alba Pérez-Aragón, a young woman with cystic fibrosis, also known as mucoviscidosis, who has shown an incredible spirit of perseverance.
The most expected call
In 2021, Alba starred in an informational video with us. At that time, she talked to us about the drug Trikafta (Kaftrio in Spain) and cystic fibrosis. She was on oxygen 24 hours a day and was on the pre-waiting list for a double lung transplant.
At the begining of 2020, she received a very special call: the Spanish Agency for Medicines and Health Products (AEMPS) had authorized compassionate use treatment with Trikafta. Alba tells us that this call changed her life, because her life took a 180-degree turn.
The magic pill
That “magic pill,” as she calls it, has allowed her to do the things she wanted to do again, to “be myself” again, to “live again.”
She is extremely grateful for this gift from science.
Alba had the strength to undergo treatment so that she would have a chance of living to see the day she received that call.
Fulfilling dreams
Alba continues to travel around the world and fulfill her dreams. She says that this treatment has given her wings to fly.
“When you hit rock bottom, you learn that you have to live in the moment, enjoy yourself, and leave when the time comes, saying that you did everything, that you lived intensely.”.
We must send a message of hope so that people with cystic fibrosis can enjoy life as much as they can or as much as their illness allows, but always complying with their treatments so that in the future they can access innovative treatments that improve their quality of life, as Kaftrio did for her.
Contributing to society
They wanted to give Alba indefinite leave from work, but she refused. In fact, she accepted a new job that required her to carry oxygen with her 24 hours a day.
As a nephrologist, she could not be in contact with patients, but she could help in a service such as the Emergency Department (061), answering calls from people in urgent situations.
Thanks to her colleagues and the report they issued, the INSS discharged her so that she could continue pursuing her vocation.
No challenge is impossible
Alba also takes on challenges that require physical effort. She recently completed “Sa Travessa” (the GR221 route in the Sierra de Tramuntana mountains in Mallorca), a 100 km hike.
“The experience has been incredible. Thanks to the physical exercise sessions we do with Joan, the physical educator at the Respiralia Foundation and founding partner of Físic Espai de Salut Integral, I have greatly improved my functional capacity and exercise tolerance. I have been able to do it.”.
The effort pays off, so the final message is that it is worth undergoing treatment in order to reach the day when that innovative treatment comes out or, who knows, the definitive cure.
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