Narrative medicine, 46 stories to understand myasthenia gravis

“It was 1981, I was 15 years old and I was a happy and restless teenager. Between studying Latin and Greek, I played sports and met many friends. One summer evening it happened that at a concert I saw two singers on stage instead of one. I wasn’t drunk or even on drugs. I talked about it with my mother who had realized for some time that my eyes were not the same: my eyelids were often lowered and I found it hard to keep them open”.

Thus begins one of the 46 stories. Firsthand testimonies of doctors, caregivers, and above all patients, who tell the experience of those suffering from myasthenia gravis: from the first symptoms, to diagnosis, to daily living with the disease. It is the book “Narrare la Myasthenia Gravis”, created by the Health and Health Area of ​​ISTUD, in collaboration with Alexion, AstraZeneca Rare Disease and the support of AIM, the Italian Association of Myasthenia and Immunodegenerative Diseases Section Friends of the Besta ODV. The volume was previewed today, and will be available in the regional sections of AIM throughout the country and at the neurology centers that have participated in the initiative.

What is myasthenia gravis

The goal is to raise awareness of the needs and problems of the approximately 18,000 people who live with this rare disease in our country. A chronic autoimmune disease that causes loss – fluctuating – of muscle function. The most common symptoms are double vision, eyelid ptosis (drooping of the eyelids), chewing and swallowing problems, difficulty articulating speech, muscle fatigue – so it can suddenly happen that a person is no longer able to walk – and respirators. In fact, myasthenia can affect any voluntary muscle, thus sparing only the involuntary muscles: heart and intestinal system. In the most serious cases it can also cause respiratory crises, with the need for assisted ventilation. And if not treated properly, it can even lead to death.

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“One of the main problems – he explains Francesco Habetswallner of the Complex Neurophysiopathology Operating Unit of Cardarelli in Naples – is the lack of early diagnosis. The period between the onset of symptoms and diagnosis can be very long and this causes considerable anxiety and frustration in patients. But even when the disease has been managed, the difficulty of accessing specialist care negatively affects the patient’s experience. In fact, the management of myasthenia gravis requires a multidisciplinary approach in highly experienced centres”.

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An invisible disability

One of the complications is that it is an invisible disease. As the testimonies contained in the volume presented tell us, the symptoms of myasthenia gravis can fluctuate in intensity even during the same day, with periods of remission and relapses. This makes simple daily activities and the planning of personal and work projects impossible. The available drugs are effective, but not without side effects. For this reason, the dialogue between doctor and patient is crucial, because only from a deep understanding of the needs of each patient is it possible to manage the disease and thus ensure an improvement in the quality of life. “In the clinical evaluation of the patient – ​​he says Renato Mantegazza of the Department of Neuroimmunology and Neuromuscular Diseases of the IRCCS Besta in Milan and President of the AIM patient association – the neurologist uses symptom assessment scales that very often do not take into consideration the emotional and psychological aspects. It represents a not indifferent limit since these aspects are an integral part of the treatment. This is why a narrative medicine project like the one presented today helps us to have a more complete view of the impact of the disease on the entire family system, a fundamental premise for being able to guide the implementation of adequate and targeted support interventions for each situation. Telling one’s own story and reading experiences similar to what one is experiencing can have a positive impact both on acceptance of the disease and on adherence to treatment”.

The role of narrative medicine

It is therefore precisely from the need to tell the experiences of everyday life to improve the dialogue between doctor and patient that “Narrare la Myasthenia Gravis” originated, a project born in 2022 with the aim of creating an activity of listening to people who experience this condition and those who take care of them, family members and health professionals, with a systematic collection of narratives of their points of view. “Narrative medicine offers patients a unique space to express and share their emotions and experiences – he underlines Martha Legnani, patient of the Italian Myasthenia Association – A useful tool to reflect on one’s condition. Through the stories, the reader can find new ways to address the challenges myasthenia gravis can present. Not only that, the book is a real emotional support as the interaction with other patients and families who share similar experiences can offer a sense of understanding, support and sharing. The hope is that the volume will contribute to a greater knowledge of the disease in the population”. “Through the realization of this project we wanted to provide a tool to develop and become aware of one’s condition in order to improve the psychological well-being of those living with myasthenia gravis – he concludes Maria Giulia Marini, director of Health of ISTUD and president of Eunames (the European society of narrative medicine) – The book, however, has another great ambition: to help train health professionals who are empathetic and attentive to the human dimension of the patient. These are fundamental characteristics for establishing effective communication, which is why I believe that narrative medicine must be permanently integrated into the training path of every doctor”.