Yoga can improve the quality of life even of patients with major genetic diseases such as Cystic Fibrosis. This is why leading doctors and physiotherapists in charge of the Salesi Hospital Foundation in Ancona, decided to offer a yoga path for pediatric patients suffering from this disease. To support this initiative, we contributed Yoga kits.
Hoping to spread virtuous projects like this, we asked the Foundation’s contact persons and Laura Liuni, the yoga teacher who is leading the classes, to tell us about her experience.
We hope you enjoy reading about this important project.
Answering for the Salesi Hospital Foundation (FOS):
Dr. Antonello Maraldo, Prof. Laura Mazzanti, Dr. Benedetta Fabrizzi
Can we say that the meeting point between cystic fibrosis and yoga is the importance of correct breathing?
FOS Cystic fibrosis and yoga certainly find an important meeting point in the breathing-management. Cystic fibrosis is a fatal inherited genetic disease due to a defect in the CFTR protein that causes increased mucus density predominantly within the lung and digestive tract. This increased density leads to early acquisition of chronic lung infections, which in turn are responsible for progressive lung damage that leads patients to death, which unfortunately always occurs at an earlier age than those born at the same time. It is clear from the above that breathing is a pivotal aspect of these children’s lives and how it is constantly disturbed by mucus and coughing. Patients with cystic fibrosis must consistently undergo respiratory physiotherapy sessions to be practiced 2 to 3 times a day and daily aerobic physical activity to which a hypercaloric diet must be associated due to pancreatic insufficiency.
Laura The meeting of Cystic Fibrosis and Yoga is par excellence the breath but not only. Yoga is a comprehensive discipline that can give several benefits to CF patients and improve their quality of life globally by increasing their energy, improving all functions especially respiratory and digestive, and reducing stress (remember that these patients are subject to so many treatments, repeated daily physiotherapy, etc.), and improving the quality of life. Keeping the synchrony between breath and movement (Vinyasa), throughout the activity helps the diaphragm (a very important muscle) to relax, and stay soft and strong. Some practices combined with breathing develop respiratory and thoracic capacity. Yoga adds the pleasure of moving through breathing (synchronous) and listening, developing in each participant his or her energetic potential, achieving mental well-being to contact at the end of the class a deep peace through relaxation.
Where did the idea of organizing a yoga class for children with cystic fibrosis come from and how was it made possible?
FOS In everyday life, children from a very young age are educated in physiotherapeutic breath work, expectoration, and strengthening of rib cage muscles, and all this work is managed at home through parental support. Yoga is a practice that pays great attention to self, body and breath awareness, concentration, and mental and physical well-being and therefore represents, according to many studies on cystic fibrosis, an excellent tool to improve “breathing.”
It also represents a very suitable practice for the management of symptoms such as pain, disturbed sleep, anxiety and depression, features that are very common in patients, even young ones, with cystic fibrosis.
That is why the Salesi Hospital Foundation, chaired by Dr. Antonello Maraldo, under the direction of Prof. Laura Mazzanti, decided to promote this project, in close synergy with Dr. Benedetta Fabrizzi, head of the Regional Reference Center for Cystic Fibrosis of the AOU delle Marche (Regional Hospital Union). The common goal is to improve the quality of life of children with this serious genetic disease, following them outside the hospital as well, integrating medical therapies and physiotherapy with holistic support therapies such as Yoga. The Foundation has always paid special attention to the prevention and care of pediatric patients, and from these assumptions, thanks to the support of the Bank of Italy, the contribution of the Marche Italian Cystic Fibrosis League, which brings together CF patients and their families, and the contribution of the Salesi Ancona Patronesses Association (President Milena Fiore), decided to carry out this project.
Laura I was invited to an interview by the Salesi Foundation and Cystic Fibrosis Foundation, where they proposed I teach yoga to children and adolescents. In synergy, we developed the project together, each with our specific skills to best meet the needs of the children and adolescents and thus achieve the goals set in the various stages of implementation.
Who is the course aimed at and how is it taking place?
FOS First, we created two groups of children: the first group consisted of patients aged 5 to 10 years accompanied by a parent; the second group consisted of adolescent boys and girls aged 11 to 15 years without parent participation.
Each patient was trained in yoga practice with an initial individual in-person class with the project’s yoga teacher, an expert in the subject and certified, and a physical therapist from the Cystic Fibrosis Center of the Marche Region. After the first individual yoga session, the children, divided into two groups, are doing a one-hour-meeting for six months through a digital platform.
Offering online lessons is very important as patients with cystic fibrosis should avoid contact with other patients because of the increased risk of being able to contract a respiratory germ from another participating child; becoming infected with a new respiratory germ can, in fact, generate a rapid worsening of the lung picture and of the disease itself. At the same time, online lessons allow the children, distributed throughout the region, to take the sessions at the same time, sharing the yoga experience and optimizing their free time by limiting travel to the hospital.
Laura The project was aimed at children and adolescents with Cystic Fibrosis from all over the region. The first class-an hour and a half in-person-was held in the yoga studio of the Ass. Ashtanga Yoga Ancona, where each child was accompanied by his or her parents (after having been to the Cystic Fibrosis Center at the Torrette Regional Hospital to have an examination and collect the parameters to be compared at the end of the project). Each child or adolescent was given a kit (by a ‘representative of the Salesi Foundation) with all the materials to be able to continue the online yoga classes.
It was necessary to choose the telematic mode (with all its limitations) to avoid the exchange of resistant bacteria in the presence, of patients of the same disease.
The presentation of the project in the presence (first individual lesson) in the teacher’s office was also important to orient younger children to recognize the place in the online yoga class. After the presentation and acquaintance, each child was shown how to use the materials provided, especially the Bolster cushion for chest opening through Restorative Yoga practices. Then the project continued online in two groups of different age groups (5-10 years old – 11-15 years old) once a week for one hour. After several classes of getting to know, orienting, working on relationships, and listening to the various needs related to each age group, we can say that we have created two groups that despite the online mode share, and practice together.
The project has been active for a few months now, how is it going? How do the young patients and their families feel about it, can you already see positive results?
FOS We are very pleased with this experience, which allowed us to come into greater contact with patients and enabled families to work effectively on breathing even through non-physiotherapy techniques.
Children and young people through yoga understand the importance of breathing and how this very natural act can be improved and enhanced.
Laura The project is continuing with much enthusiasm, we find active participation through requests for wishes, personal goals, drawings, integration, and growth in yogic practice, thus shared joy. The purpose of this project was precisely to work on the body and spirit of each participant in a pleasant open, playful way for the younger ones. Yoga offers the opportunity to perceive and experience how Asanas or postures or balance improve if the ability and quality of breathing improve. So a great incentive to enhance breathing nicely and then verify it through practice so that one’s confidence is born and evolved by measuring it in yoga practice.
Do you think you can renew this path in the future and offer it as a good practice to other hospitals as well?
FOS We do not know if we will be able to find the funds again to continue the process, but we will certainly open a constructive discussion with patient associations, and public and private institutions to support the continuation of the project in pediatric patients and the initiation of a similar project to be extended to adult patients as well.
Laura It would be very nice to continue this project, to address it to other patients as well, to be able to develop it in different age groups (including adults) so that it is more functional and usable to give everyone this great possibility that this wonderful discipline offers.
