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A new life with Kalydeco
Her relationship with the disease has gone through several phases. After a somewhat complicated phase of adolescence in terms of adherence to treatment, her life changed when he took Kalydeco. This medication improved her quality of life from 60% lung capacity to 80%.
Normalizing CF in social media
Taking this new medication made her decide to take the step of telling the whole society about this change through videos in the different social networks. In this way, Paz wanted to normalize her disease in her closest environment and help other people with Cystic Fibrosis who could go through the same situations as her. In this informative capsule we talk about how these 6 years have passed exposing her life in the networks.
Keeping well while awaiting a new medication
Her intention was to encourage people to keep themselves as well as possible so that if a drug for her mutation came along, the starting point would be a state of optimal health that would ensure many years of a good quality of life. In fact, she now sees how the drugs Orkambi, Symkevi and Kaftrio have appeared which will be able to help many people as Kalydeco did for her.
The co-responsibility of the person with Cystic Fibrosis
In this sense, we talk about the co-responsibility of the person who has Cystic Fibrosis when applying the treatment. It does not make sense to depend on a physiotherapist to do a good physiotherapy session. It is necessary to learn the techniques and apply them correctly so that the sessions are productive and effective.
A holistic approach to treatment
Paz advocates for the figure of the “active patient”, in which the person with CF does the treatment, not only from a physiotherapeutic point of view, but in a holistic way. She recalls how, since she was a little girl, her father was with her doing physio every day early in the morning and late in the day. Her mother, on the other hand, was more in charge of being that emotional support that is so necessary if we are talking about a chronic disease.
Adolescence, a difficult time
She remembers with regret how in her teenage years she left treatment a little bit aside. In fact, she keeps the results of the various tests and sees how the test values dropped significantly at that time. Therefore, for her, doing physiotherapy two days a week is like doing nothing.
Telling experiences about Cystic Fibrosis
Carlos Pons tells how the Respiralia Foundation promoted a meeting between adults and adolescents with CF. In that meeting, adults told how they fell into teenage mistakes and strongly encouraged not to fall into them now that they were in time.
Using social networks for a productive purpose
Paz has managed to take advantage of the networks. She spends time on the networks on something productive, while many other people “waste” time on the networks. She believes that the networks have many positive and also many negative things. Her professional life has been geared towards social networks, so she has a personal and professional criteria on this subject.
Am I able to tell my life in social networks?
She stresses that the person who wants to expose her life in the networks to help other people has to be trained, because it is very nice when they thank you for your work, but when you have a bad day or see people who are the same as you or you are worse off than them, it can become a burden. In other words, you have to know how to manage these situations.
“Five feet apart”, a film closely related to this topic
Carlos Pons confesses that watching her videos reminded him of the protagonist of the movie “Five feet apart”, since both use social networks to tell their daily experience with Cystic Fibrosis.
Telling about Cystic Fibrosis in a natural and non-victimizing way.
Finally, all those people with Cystic Fibrosis who are able to tell their lives in social networks are encouraged to do so in a natural and non-victimizing way, following the philosophy of the Respiralia Group.