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Laura is a 29 year old girl who decided to get the ball rolling in Cystic Fibrosis. She tells us about it in this new informative capsule recorded during the XXI Swimming Tour around Formentera against Cystic Fibrosis.
Change of attitude
She changed her “passive” position in front of CF to start doing endurance exercises at the program of the Respiralia Foundation. This change also motivated her to modify her habits in the physiotherapeutic treatment, so the improvement has been remarkable.
Her great improvement
In a scenario such as the Swimming Tour around Formentera against Cystic Fibrosis in which Laura participated the first weekend of September 2021, the question was obligatory. What difference have you noticed compared to your first participation when you were a teenager? Laura makes it clear. She tells us that she was thinking about how good she felt while swimming and how she was swimming much more distance than she could have imagined before the event started.
The stress of her job
Being a primary school teacher involves a lot of stress. When she started, every so often she had to take a leave of absence due to fatigue and have treatments at home or even at hospital. Those times are now behind her thanks to proper daily treatment, her endurance exercises and, of course, the fact that she is one of the beneficiaries of the Kaftrio (Trikafta) compassionate use program of Vertex Pharmaceuticals.
Autogenic Drainage, endurance training and Kaftrio/Trikafta
This testimony reinforces our commitment to the combination of the autogenic drainage technique and endurance exercises and to maintain our pressure on the Spanish Government and Vertex Pharmaceuticals to reach a price agreement for Kaftrio as soon as possible. This drug must be available to doctors to avoid deterioration of the vital functions of people with Cystic Fibrosis.
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.
