The girl, enrolled in Biological Sciences, has a passion for research and for sport “I would like to be useful to those who have a rare disease like me”
Syria, 23, was born with one severe anorectal malformation (MAR). As a child she underwent a delicate surgery, as well as numerous invasive examinations, hospitalizations, continuous checks. As if that were not enough, the rare disease that affects such an intimate sphere, must learn to deal with unpleasant ailments, aggravated during adolescence by those “tics” in the belly (due to Tourette’s syndrome) that make her urinary incontinence worse. Syria hides her malformation because she is ashamed and fears of being marginalized. Until she decides to reveal that secret that prevents her from feeling free and accepted: in 2020 she writes an autobiographical book “Me, me and myself” (Porto Seguro Editore) in 2020, then continues to tell her experience, as she did at the recent national conference of AIMAR – Italian Association of Ano-Rectal Malformations, a point of reference for patients with MAR and their families. «My intent – she says – is to help those who, like me, have had to face and are still facing serious health problems, without giving up on living».
Escamotage to live with the MAR
“During childhood – says Syria – I saw the disease with the eyes of a child and I didn’t understand why I had to undergo such invasive tests and undergo continuous treatment. I thought I was “wrong” because I couldn’t be a continent like my peers, even though I tried my hardest. Over the years, cleaning, which is also essential in MAR to avoid infections, had become almost an obsessive ritual. And then, I always felt inadequate, out of place”. With the help of his parents, Syria finds some ploy to live with the MAR. “For example, – she remembers – when I was little I never wore pants but I wore skirts and women’s knee-highs that I wore as hold-ups, being small: so I was able to change quickly even alone, spending less time in the bathroom”.
Passion for sport
Over time the desire to lead as normal a life as possible like the other peers
, cultivate their passions, hang out with friends. «Since I was a child – says Syria – with the necessary precautions I have always done a lot of sports, including skiing and horse riding. They seemed poorly suited to my conditionmostly because I can’t take spinal hits, instead they made me develop one powerful muscles that support the back and pelvis, thus attenuating the effects of the malformation, otherwise I might not have been able to walk anymore. The doctors, in fact, recommend continuing to exercise ».
«When I skate I go back to breathe “
Syria’s greatest passion is ice skating. “When I skate – dice – I feel really good, the symptoms of the “Tourette” almost do not feel them and I seem to breathe again. Unfortunately, this summer I fell while ice skating in South Tyrol. I had to give up the races and I experienced those limits that the MAR sets, although I try not to break down. In reality, I still bear the signs, especially on a psychological level, of the trauma experienced in childhoodwhen thea malformation has upset my life. Psycho-behavioral therapies have helped me a lot, but also to write. I always had a diary in which I wrote down my days with the MAR. So I thought I’d tell my story in an autobiographical book for be of help to those who live an experience similar to mine. And they published it to me ».
Free from prejudice
Since then, no more secrets. Syria feels free to be herself. He says: «I no longer have to invent excuses, people who previously did not understand certain behaviors and actions, or thought I was strange, finally understood. But who determines what normality and diversity are?
We should be able to hear each other free from prejudice and criticism, without being considered strange or abnormal mostly if we face serious health problems. And in any case, being different does not mean being wrong. Over time I realized that maybe I am not strange, but simply unique ». Projects for the future? «I study biological sciences at the University of Florence and science is my other passion – confesses Syria -. I would like, one day, to be able to f
research on rare diseasesin general, to try to help those who, like me, suffer from it».
October 23, 2022 (change October 23, 2022 | 11:50 am)
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