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The Respiralia Group organized the workshop “Looking to the future of Cystic Fibrosis” with speakers of the stature of Dr. Eva Polverino and Dr. Amparo Solé and the collaboration of Chiesi, Santos Nixe Palace Hotel and Mia Restaurant.
A visit to the Respiralia Group’s facilities
Dr. Eva Polverino and Dr. Amparo Solé took advantage of their trip to Mallorca to see first hand the facilities of the Respiralia Group and the program Education equals Health in Cystic Fibrosis.
Workshop “Looking to the future of Cystic Fibrosis”.
This workshop was focused so that families could ask those doubts they have regarding the future of Cystic Fibrosis.
Thanks to the specialization of each of the people who accepted the invitation as speakers, topics such as bronchiectasis remaining in the airways even when taking Kaftrio, the importance of continuing treatment even when taking the modulators, the research projects already in the experimental phase that exist for people who do not have the F508del mutation, the advances and problems that exist in pediatrics, the problems of excess weight that are seen after taking Kaftrio and the importance of physical exercise in the treatment of Cystic Fibrosis were discussed.
Dr. Polverino tells us about bronchiectasis
Dr. Polverino explains that a person with Cystic Fibrosis who takes the new modulators will be able to regulate the defect that caused the origin of the bronchiectasis (CFTR protein defect), but will still have dilation in the bronchi and chronic inflammation (bronchiectasis). This inflammation makes it very difficult for the secretions accumulated in these areas to be removed naturally, leaving a focus of infection.
Therefore, it is necessary to continue respiratory physiotherapy (mainly autogenic drainage).
Dr. Amparo Solé explained the new research projects
Dr. Amparo Solé referred to the research projects that are underway to find a medication for people who do not have the F508del mutation.
He explains that Kaftrio is being tested on 18 mutations other than F508del, with results expected within a short period of time. These 18 mutations have been shown to be sensitive to Kaftrio in in vitro research.
In addition, progress has been made in the research project with messenger RNA, a treatment that will not distinguish between mutations, i.e., it will work for the entire population with Cystic Fibrosis.
Finally, DNA (genetics) research, which is more long-term, is still underway.
Dr. Joan Figuerola compares the different periods he has lived through in CF
With 35 years of experience, Dr. Figuerola has lived through all phases of the evolution of the treatment of the disease.
Currently, he stresses that the new modulators mean less workload because they now receive fewer treatments. In fact, he says he would like the new modulators to “retire him” because he no longer needs to be monitored.
Dr. Alex Palou talks about the new paradigm presented by CF
Dr. Palou detects that we now have to start worrying about other aspects of the disease, since the new modulators are correcting the origin of the disease.
He knows that his patients have relaxed a bit, but he also advocates that they take good care of themselves so that when more advanced treatments arrive, they can be in optimal physical condition.
Ketty Ruiz explains the importance of continuing to do respiratory physiotherapy
Taking Kaftrio means less accumulation of secretions in the airways, so the sensation is that there is no need for respiratory physiotherapy.
That said, he specifies that bronchiectasis are lung lesions that remain and continue to accumulate secretions. On the other hand, he indicates that a direct relationship is not seen between the spirometry results and the feeling of improvement in their quality of life, i.e., that a greater improvement should be seen in spirometry.
Autogenous drainage can help mobilize those secretions accumulated in the airways due to bronchiectasis.
Joan Llobera talks about the type of physical exercises best suited to CF
Joan states that physical exercise is like a drug that must be administered in the right dosage to each person.
Maximum strength and endurance exercises help to improve lung capacity. In addition, a stronger musculature allows us to better withstand activities that require physical effort with the same lung capacity.
Workshop recording
Here you can watch the recording of the entire workshop.
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