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Dani Rio is a fighter who explains how to overcome the adversities of Cystic Fibrosis in this new informative capsule of the Respiralia Foundation.
Initial situation
At the beginning of 2018, Dani was at an out of the ordinary lung capacity: 120%. He played tennis 4 days a week and enjoyed soccer with his friends on the weekends, all while still taking his almost 40 pills a day and doing his twice-daily respiratory physiotherapy sessions. When he was in his second year of high school he began to notice that something was wrong.
Something is wrong
It was not until the end of 2018 that tests detected Mycobacterium Abscesus. Until then, he had never been admitted to the hospital. He had not even done any intravenous antibiotic treatment. With these sensations, he was unable to finish his academic year or start it in September. From 2019 onwards his lung capacity was decreasing until it reached 40%.
An unexpected journey
At that time, he was given Symkevi, with which he was able to make up 10 points and was able to retake the Institute. It was a mirage. A simple rhinovirus ruined his recovery, to the point of having a critical desaturation that forced the medical team to sedate him, intubate him and take him by ambulance airplane to the Hospital La Fe in Valencia.
After a year locked up in an apartment because of Covid-19 and his situation due to the bacteria, well into 2020 his medication was changed and he was given Trikafta, a combination of Kaftrio and Kalydeco. After a few months of adaptation, Dani returned to his home in Mallorca.
Overcoming the adversities of Cystic Fibrosis
Today, he tells us how he overcame the emotional bumps to keep fighting. His family always instilled in him that he had to do well with the treatments to control Cystic Fibrosis, so even in times of low spirits, he did his sessions and made an effort to mobilize his body. He tells how he had to learn to walk again after his stay in the ICU, but the feeling of achieving it and being able to move forward, thanks to the help of the physical educators of the Respiralia Foundation, to be able to do 30 push-ups on the floor and take long walks encourages him to continue in this line.
Without daily treatment, Cystic Fibrosis beats you
He knows that if he had not taken care of himself as he had always done, he would probably not be with us today. That margin that allowed him to start the fall from 120% lung capacity allowed him to resist the onslaught of a multiresistant bacteria that, although it has changed his life, has not been able to break his mental strength.
Dani, an example for everyone
Dani is an example of overcoming, of resilience, of how to be an expert patient who wants to master his disease. In short, an example for all people with Cystic Fibrosis, for all those who have some kind of limitation and, why not, for those of us who are lucky enough not to have any disease but complain about anything. As Dani says, we have to take advantage of the now and enjoy the good things, leaving aside that which does nothing but disturb our joy.
Dani is an example of overcoming, of resilience, of how to be an expert patient who wants to master his disease. In short, an example for all people with Cystic Fibrosis, for all those who have some kind of limitation and, why not, for those of us who are lucky enough not to have any disease but complain about anything. As Dani says, we have to take advantage of the now and enjoy the good things, leaving aside that which does nothing but disturb our joy.
Dani is an example of overcoming, of resilience, of how to be an expert patient who wants to master his disease. In short, an example for all people with Cystic Fibrosis, for all those who have some kind of limitation and, why not, for those of us who are lucky enough not to have any disease but complain about anything. As Dani says, we have to take advantage of the now and enjoy the good things, leaving aside that which does nothing but disturb our joy.
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 2000 mutations are known in the gene that is defective in people with Cystic Fibrosis, although only about 150 mutations are described as causing 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 (1 in 40 in the Balearic Islands).
In the Balearic Islands there are 76 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
