“My name is Chiara Cumella, I am 23 years old and 13 rare diseases“. A letter, an outburst indeed, arrived via e-mail to the editorial staff of Luce! by a Sicilian girl who, due to her pathology, is forced to choose between one right, that of being treated, and another, that of continuing her studies. Arrived at fifth year of Medicine to the Romanian university, which has a branch in Enna, at the base of which is the Proserpina Fund, “in recent years I have been denigrated, offended, humiliated, mistreated just because I wanted to study medicine despite my health problems, ”he says.
“Since I was little I’ve always dreamed of being an anesthetist, but in these five years they have always just closed the doors on me and told me that those hospital corridors I had to go through as a patient and not as a student. At the beginning of the new academic year asked to take the lessons online, waiting for the next intervention in the United States, which unfortunately for a series of reasons independent of me I do not know when it will happen – continues Cumella -. During the height of Covid, they made me do it while now they don’t want to know, despite the fact that there are no internships and right now he only has to take theoretical courses. Unfortunately i can’t go to university, I am attached to an IV, I have a nasogastric tube with artificial nutrition, I have a bladder catheter, I am in a wheelchair: all conditions that I will have at least until the surgery. But I can’t afford not to follow. Help me assert myself“.
How long have you had these health problems?
“I discovered I had rare diseases when I was 12. I’ve done over 33 surgeries since then in America; the last in November 2021, after which I was better and managed to lead a semi-normal life. Then, for two months now, I started feeling sick again and I will have to undergo a new operation. I have Ehlers Danlos syndrome, so I continually do spinal fusions; I have the Mast Cell Activation, which causes me continuous allergic crises, and still several related pathologies. I also ended up in a coma several times ”.
Instead, the dream of becoming a doctor when he was born?
“I’ve always had it, I’ve dreamed of being an anesthetist ever since I was a child. I am in the fifth year, I am in good standing with the exams and perfectly in progress. The only problem that has arisen is this of the online lessons. But in my course of studies they have repeatedly put a spoke in the wheels, right from the start “.
What kind of obstacles did you encounter?
“I had done the test in Palermo, at the local university, but they didn’t correct it for me. I was supported by a tutor, because in that time I had vision problems; this one posted the sheet in the wrong box (the one of the registry) and I saw it, asking him for an explanation. He retorted that, working at the university, he knew very well what he was doing. I got angry, I tried to get the paper back but the exam chairman told me that I couldn’t do it and that consequently my test was null. On that occasion I called the police, but the tutor first placed the blame on me, then admitted the blame. The agents, however, convinced me not to file a complaint, because if I had entered I would have suffered repercussions. In all this, I was assured that the task would be correct, but 5 years have passed and I have not heard from any more, but the police testimony has also disappeared. The year after then I decided to enroll at the Romanian university in Enna, so as not to waste any more years ”.
In this university, however, how did it go?
“The first year, despite having communicated that I had health problems, I was quite well and went to class without problems. But the rumors were already circulating, a professor at the first absence began to tell me: ‘You have to choose whether to cure yourself or study’. In the second year there was an unpleasant episode: during a laboratory examination of anatomy I had a venous access for the drugs, but the prof approaches me almost to the end and starts screaming, because she had put in her head that around to it I had written all the answers of the task. He took my bag and dumped the contents on the table, all the drugs, he kept me in the room for the next hour threatening to pass away because his I didn’t have to stay there but in the hospital, I would never have graduated … Also in this case I would have liked denounce but they convinced me to give up, because they would never have let me pass the exams otherwise ”.
Even today, despite having managed to reach the fifth year perfectly in progress, things have not improved …
“They are taking away from me the right to study, education, human dignity. It is not possible. Today (we are in mid-October) I had to go to university because if I don’t follow the lessons I can’t take the exams. Despite having all the necessary certificates stating that I cannot attend, because I cannot stay away from the machinery. But since I really want to go this morning I went, against everyone’s opinion ”.
In short, one right (that of health) cannot exclude another one (in this case the one being studied).
“Also because the alternatives exist, just access a webcam in class… The worst thing was the denigration suffered, they always told me that I can’t study, I can’t be a doctor. But this is not for them to say. Maybe I will not be an anesthetist, I will do something else, but they cannot establish in principle that I will never be a doctor because of my illnesses. Among other things, the director of the university justified the refusal to let me follow the theoretical lessons at a distance, saying that otherwise ‘everyone would do it’. A meaningless justification is not that all students have my problem. I did not ask not to do the internship, but only to follow the online lessons this semester ”.
Who, on the other hand, has never made you lack their support?
“The association ‘The wings of hope‘, born to raise awareness of my disease. What is coming out, since I launched my appeal, is that there are so many people who have found themselves in the same situation as me and have withdrawn because they may not have had the strength to go on. And my family is close to me, they are with me in this battle against the system. We asked for help from a lawyer for the warning, but at the moment we have not obtained anything, because the teaching plan requires that I go to the university class, because I have to respect the statute where it says that they cannot accept those who do not follow in attendance. What I ask is that we go beyond what is written, because there are cases and cases ”.