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Narrative Medicine reveals the burden of caregivers: an interview with Letizia Ragusa

We gladly host the contribution of Letizia Ragusa, MD, Specialist in Endocrinology and Clinical Pharmacology, Endocrinologist and Auxologist at IRCCS Oasi Maria SS in Troina (Enna, Sicily) and participant to the PRAXIS project, addressed to people with Prader-Willi syndrome and conducted by ISTUD Foundation.

Since 1990, I have been working at the IRCCS Oasi Maria SS, a research institute for mental disability and cerebral involution. It was born about fifty years ago in Troina (Enna – Sicily), from the aspiration of our founder, Father Luigi Ferlauto: treating weaker people, those with neurocognitive delay.

Since 1990, I’ve been working as Endocrinologist and Auxologist, dealing with both patients coming from our regional territory (Sicily) and people with mental disability and involution undergoing diagnostics and rehabilitation. Most of them are affected by rare syndromes.

I am responsible for the Growth Hormone (GH) Prescription Centre, with patients from pediatric to adult age. For twenty years I have been a member of the Italian SIEDP Group for genetic obesity, where we study the Prader-Willi syndrome (PW) with paediatricians and endocrinologists, carrying out research projects at a national level. Furthermore, at the IRCCS multidisciplinary team has been set up. It is composed by paediatricians, endocrinologists, psychologists, educationalists, neurologists, physiatrists, physiotherapists, speech therapists, social assistants. This working method allows us to carry out diagnostic and rehabilitation protocols for people affected by PW.

My encounter with Narrative Medicine took place five years ago, in Bari, during a SIEDP congress. I had the opportunity to listen to Dr Maria Giulia Marini’s speech on Narrative Medicine applied to diabetes, and I was impressed by the terms used – such as disease, illness, sickness.

At Oasi, even without using these terms, we already put into practice what Dr Marini explained: for this reason, I felt the need to know her, to be able to apply to people with PW the method of Narrative Medicine.
I immediately believed that this approach could also be critical for families and all professionals who take care of people with PW.

In 2018, finally, the PRAXIS project was born, with the unconditioned support by Sandoz. Here, I would like to highlight the number of narratives of family members, 122: they are heroes because they find themselves fighting alone for their children who live the big problem of the “absence of a sense of satiety”. So, these children “live to eat”, with obsessiveness and cunning, creating all the possible strategies. Parents and siblings will live the problem of performing “food control” on these children: if left unchecked, they reach severe forms of obesity, with the related medical consequences. They can also die from too much food they eat.

The news of the father of a daughter with PW who committed suicide is pretty recent. My thoughts of support go to all parents with disabled children: we really must take care to them, together with their children, because they are the ones creating well-being at home and helping their children to be involved in society. I also believe that courses should be set up for PW specific educators because the control these kids need cannot be just a family task. We, working on disability, believe in Narrative Medicine, and we hope that it will help even more these precious souls.

I do believe that Narrative Medicine is a powerful tool: not only for the all-round management of the patient but also for a renewal of our Health Service, in particular concerning hospital and ambulatory facilities, where these patients spend most of their time. For me, Narrative Medicine has become an integral part of the approach to the patient: it means the ability to create empathy, which I consider fundamental in my work.

At a general level, there is still a lot to do: often, Narrative Medicine is still considered more a discussion “for philosophers”. On the contrary, I believe it is an integral part of the cure: this is the message I try to communicate, in my daily life, in my working context. In genetics we speak of behavioural phenotype, that is the set of behaviours that characterize a particular syndrome: behaviours that can be read, therefore, only through a perfect narration of the patient him/herself or of who takes care of him/her.

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