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Mar Gallego, physiotherapist of the Respiralia Foundation, talks about adherence to treatment in CF in this new informative capsule.
Training after diagnose
Cystic Fibrosis is a chronic disease that needs daily treatment.
Mar Gallego, physiotherapist of the Respiralia Foundation, talks about the importance of treatment from the moments close to diagnosis. If this occurs when the child is just born, after the process of mourning for the acceptance of the disease, it is recommended to start learning the proper technique to clean the lungs, in our case the Autogenous Drainage. It may not be out of necessity, that will be the decision of the team of professionals at the hospital, but to create a habit to a physiotherapeutic treatment that, sooner or later, will be present in the life of that person.
Babies with Cystic Fibrosis
This process is done step by step, teaching parts of the technique in each session. At the Respiralia Foundation a first mini clinic is performed, in which some guidelines are given so that parents know how to act if the baby with Cystic Fibrosis has mucus accumulation. This technique could be applied in babies who do not have any disease, because it is common that it happens at some point.
Mobilization of secretions in the lung
In a healthy person, the lung mobilizes approximately 150 liters of secretions per day, but many times we do not realize it because we swallow it. In Cystic Fibrosis, having denser secretions, this mobilization does not occur, so it is necessary to do physiotherapy.
Adherence to treatment in CF
The integration of this technique is similar to teeth cleaning. Normally, we try to get children to start at an early age. The problem with integrating the technique at a later age, for example in adolescence, is that it will be much more difficult for that person to accept having to dedicate that time to the treatment instead of being with his/her friends.
When to teach the technique
Teaching the technique when the lung is more reactive, that is, with more accumulated secretions, is much more complicated.
Adherence to treatment at an early age, therefore, is highly recommended for people with Cystic Fibrosis in order to prevent infections from an early age.
Sobre la Fibrosis Quística
La Fibrosis Quística es una enfermedad genética, grave y degenerativa que a día de hoy no tiene cura. Afecta, principalmente, al aparato respiratorio, al digestivo, al reproductor y a las glándulas sudoríparas.
El tratamiento para la Fibrosis Quística se basa en la antibioterapia, una nutrición saludable e hipercalórica y la fisioterapia respiratoria combinada con ejercicios de reeducación al esfuerzo.
Puedes ver la infografía publicada por la Federación Española de Fibrosis Quística en este enlace.
Actualmente se conocen más de 2000 mutaciones en el gen que está defectuoso en las personas con Fibrosis Quística, aunque solo unas 150 mutaciones están descritas como causantes de la enfermedad.
Las estadísticas hablan de que una de cada 5.000 personas en España hereda dos copias mutadas de este gen y tiene Fibrosis Quística (1 de cada 6.400 en Baleares) y de que una de cada 35 personas es portadora asintomática de una mutación (1 de cada 40 en Baleares).
En Baleares se conocen 76 casos diagnosticados, pero según esas estadísticas debería haber entre 85 y 90 posibles casos.
El proyecto de sensibilización de la Fundación Respiralia pretende dar a conocer esta enfermedad para poder descubrir aquellos casos de personas que tienen Fibrosis Quística pero todavía no han sido diagnosticadas.
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