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From the Respiralia Foundation and the Cystic Fibrosis Assotiation of the Balearics we are launching some informative capsules on topics of interest about Cystic Fibrosis. We start with the first one about Cystic Fibrosis and Trikafta / Kaftrio.
We will talk with people with Cystic Fibrosis and their families and with professionals dedicated to its treatment.
Cystic Fibrosis and Trikafta
In this first capsule Carlos Pons interviews Alba Pérez-Aragón about Trikafta, as it is called in the United States, or Kaftrio, as it is called in Europe..
Alba is a 32-year-old girl, a nephrology specialist who also has Cystic Fibrosis.
From 2017 to 2019 she had a significant drop in lung capacity that left her on the verge of a lung transplant. Her work schedules, with her on-call duties, and her desire to not want to stop doing the same things she did took a toll on her health.
Compassionate use of Trikafta
In 2020, Vertex Pharmaceuticals granted her Trikafta / Kaftrio for compassionate use. Thanks to this new drug, her life has changed for the better, despite the Covid-19. Doctors have taken her off the transplant waiting list because of her improvement. After being on sick leave for a long time, she is back to work, to do exercise with some intensity and to study, with renewed spirit and more strength than ever.
You can listen and watch the full interview in this link.
What is Cystic Fibrosis?
Cystic Fibrosis is a genetic, serious and degenerative disease that to date has no cure.
It mainly affects the respiratory, digestive, reproductive and sweat glands.
You can see the infographic published by the Cystic Fibrosis Spanish Federation in this link or see how Dani tells us what this disease is for him in this vídeo.
Currently, more than 2,000 mutations are known to cause the disease.
Statistics show that 1 in 5,000 people in Spain has Cystic Fibrosis (1 in 6,400 in the Balearic Islands) and 1 in 35 people is a carrier of a gene that causes the disease.
In the Balearic Islands there are 73 known diagnosed cases, but statistics speak of between 85 and 90 possible cases.
The awareness project of the Respiralia Foundation aims to raise awareness of this disease in order to discover those cases of people who have Cystic Fibrosis but have not yet been diagnosed.
#TogetheragainstCF
