Three degrees, a career as a teacher and an artistic talent that not even the disease has curbed, despite affecting various organs including the eyes. It is the story of Lucia Marotta, founder and president of the National Association ANIMa.SS ODV, suffering from primary systemic Sjögren’s Syndrome, a rare degenerative disease, clinically incurable and fatal to the point of being fatal for 5-8% of lymphoma patients. From the book written years ago by the woman, the film “The sand in the eyes” was born, available on Amazon Prime Video from mid-August.
An active life
Lucia, now a retired teacher, has always led a very active life not only as a teacher but also for the many consultations she offered both to students at school and to various external realities as a psycho-pedagogist. Not only that: Lucia has also become a director, playwright and in 1994 she wrote the book “Behind the bars” in which she recounted her professional experience of a year spent among the inmates of the Montorio prison. In short, he certainly didn’t have time to get bored.
The signs of the disease
He was 46 when he began to experience the first symptoms of the disease: severe asthenia and a body that no longer responded. “Suddenly, strange ailments, joint pains, fatigue began. Everyone was thinking about stress but I felt it wasn’t just that. The family doctor recommended some tests and a very high alteration of the gamma GT came out, a blood test connected to the liver, ”says Lucia. Generally, when the values of this enzyme are high it is because you drink a lot, but Lucia didn’t drink at all. What about the symptoms? “There were many”, replies the woman: “From burning to feeling the sand in the eyes, canker sores in the mouth, ulceration of the oral cavity, vagina, atopic dermatitis with burning and itching, difficulty swallowing, inflammation of the trigeminal, vasculitis, respiratory problems “. In short, a complex picture and in fact arriving at a diagnosis would have been a long and complex path.
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Vision problems
Meanwhile, they tried to understand what the problem was and what name to give to the disease. The woman had over fifty specialist visits, first in gastroenterology because the problem at first seemed to involve the liver. But while the values of the Gt range continued to rise, so did the discomfort and suffering at the eye level: “I thus began to undergo several eye examinations because the pain often became unbearable, without finding remedies to the point that in August 2001, after unsuccessful attempts, I was forced to go to the emergency room for acute corneal suffering ”, continues the woman. In reality, his eye discomfort, which was often diagnosed as chronic conjunctivitis, was due to a tear deficit typical of this disease and at some point the situation worsened up to the perforation of the cornea with the risk of blindness.
Hospitalization
“After a long ordeal and a first 20-day hospitalization in Verona – continues the story Lucia – I was told that I had injuries to the cornea and risked blindness for which I was forbidden to use TV, newspapers, computers. At that moment, the world collapsed on me ”. But it is with this first hospitalization that he gets a first diagnosis of suspected Sjögren’s Syndrome. “In September 2001 at the time of admission, although I had three degrees, I didn’t know in the least what Sjögren’s Syndrome consisted of and no one thought it important to explain it to me”.
The strength not to give up
Despite the sense of emptiness and abandonment that Lucia felt, she always tried to fight and not give up. “I told everyone what was happening to me, about this suspected Sjögren Syndrome that no one knew, about the suffering and pain it caused me having affected many of my vital organs: liver, lungs, central and peripheral nervous system, trigeminal, genitals, stomach transforming my life into chronic widespread pain ”.
Looking for treatment
After the long wait to understand what illness she suffered, Lucia began the pilgrimage in search of trained specialists and hospitals that could confirm the diagnosis: Verona, Negrar (VR), Florence, Siena. “In short, after so much wandering, the diagnosis arrived in 2004 from the University of Udine, after 5 years. Fibromyalgia Syndrome, Hashimoto’s Thyroiditis and other symptoms were added to the Primary Systemic Sjögren’s Syndrome ”. Finally, the invisible disease had a name, but the problems were still many because Primary Systemic Sjögren’s Syndrome was not and is not recognized as rare and consequently services, benefits and aids are not recognized. “I naively thought – confesses the woman – that once I had the diagnosis it would be easy: I would find services, hospitality, listening and trained doctors who tried to heal me”.
The battles of the Association
After months of suffering, bitterness, despair and depression, Lucia reacts: “I transformed my pain into love for others by founding the Association on April 18, 2005 in Verona and dedicating myself totally to sick people like me and to give them a voice. , dignity and right to health denied today “, he proudly declares, adding:” Living with this serious pathology, which is often invisible even to family members themselves, is very frustrating because from the outside no one sees this disease except in the degenerative phase with motor and visual difficulties “. At present there are no drugs that cure but only palliatives with strong contraindications and side effects that often damage the various organs of a person affected by the primary systemic form, which is sprawling. “Replacement drugs and dental care – continues the president of the association – are at our expense and rehabilitation therapies are dispensed once or at most twice a year. Even if seriously ill, I am proud of what I have done and what I am doing for all sick people in Italy, like me ”.
Real life, books, theater and cinema
But Lucia is a volcano, despite her illness. And so, in addition to engaging in the association, he continues to write books including the fairy tale ‘La Principessa Luce. The Gnome Felicino ‘and’ The sand in the eyes’. It is from this last book that the play ‘Monsieur Sjögren and the courage of a woman’ is taken and now the film that bears the same name as the book and which has been on Amazon Prime video since mid-August. The film tells the life of a woman, Beatrice (Valentina Corti), married to Sergio (Adelmo Togliani) very committed as a teacher and in the world of volunteering as a psycho-pedagogist. A woman who loves, who suffers, who resists, who, despite everything, continues to look pain in the face, to bear it with gritted teeth. One day Beatrice discovers that she has an invisible disease, which enters her and begins to run through her veins, preventing her from moving, smiling, being happy, a disease that has a name that is difficult to memorize: Sj? Gren, the invisible disease, but heavy as a boulder that you drag with you every day of your life.
“The film – declares Lucia – was made to raise awareness among all citizens, doctors, researchers, institutions, politicians and the world of youth on this rare disease and at the same time create acceptance, empathy and solidarity around an invisible pathology which mainly affects women, often making their quality of life very poor “.
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