vEight years old, a diagnosis of multiple sclerosis in 2019 and an intense life, in which dreams coexist with fears, laughter with doubts and questions about the future. Angela corresponds to the patient “type” of multiple sclerosis: a chronic, unpredictable and sometimes progressively disabling neurological disease that affects mainly young people between 20 and 40 years old And women three times more than men.
Multiple sclerosis, young and female disease
There are 133,000 people diagnosed with multiple sclerosis in Italy. 133,000 people who have been invited to write in recent months: to themselves, to look inside themselves, but also to make this disease known. It’s the countryside I don’t know, now in its ninth edition, developed by biogen and from Onda Foundation, the national observatory on women’s health and genderin collaboration with theItalian Multiple Sclerosis Association, AISM, and with the patronage of the Italian Society of Neurology, SIN. «Little is known about this disease, and that little is what makes us, who instead live with it every day, we are looked at with an eye of pity» says Angela, a medical student from Cosenza.
«That’s why I always talk about it, as soon as I can: but as if I were saying… that I’ve been on a trip. I am not my disease and if I have limits, limits that maybe will increase in the future, don’t worry: I’ll organize myself, I’ll find a way to lead my life, but it won’t be you who will make me feel “different”».
Angela’s story, from the first symptoms of multiple sclerosis
Angela’s energy and positivity are in her DNA and the diagnosis of multiple sclerosis, in 2019, could do nothing against her vitality and laughter. “Sometimes I’m afraid I look stupid,” she laughs. “But that’s how it is in my house. If you despair, does anything change? No. Then don’t despair».
At the first symptoms, Angela is 19 years old. First it’s a nuisance in the light that dark glasses can’t deal with, a severe headache that won’t go away with painkillers, then a black spot around objects when she looks at them. The glasses against astigmatism don’t help and the ophthalmologist passes the ball to the neurologist: Angela is urgently subjected to a MRI. «It was a Saturday morning, my father had gone to get the results: he called me on the phone, and his voice was shaking. We feared a brain tumor, but it was written on the report “demyelinating condition”». (The myelin lesion generates plaques – in the optic nerves, cerebellum and spinal cord – which can evolve into “scars” called sclerosis).
However, some time must pass because “the two famous words”, multiple sclerosisare pronounced together. Time, a cortisone-based treatment, a lumbar puncture (lumbar puncture to withdraw the CSF and make the diagnosis) and some pain crises. But also several outings with friends that Angela lives as if nothing had happened.
Diagnosis and fear for the future
«Then, it was Father’s Day, we go to collect the results of the liquor analysis and I understand, we all understand. So yes, I cry. My father consoles me, tries, says that even with sclerosis I will be able become a mother. But I’m not interested in having children. On the other hand, duty pains me give up becoming a surgeon: one day, and I don’t know how far, I may not have the characteristics of the surgeon. I also wonder if, maybe in about ten years, I will enter my department and I will be for everyone the doctor in the wheelchair. These thoughts bring me down. But I think that’s normal, right?’
Another difficult moment is when the TV runs a fundraising campaign for MS: “It’s bad to say, I benefit from it, research is fundamental, but nothing, I change the channel”.
Daily life with multiple sclerosis
The rest of the time, Angela is a raging river: isn’t a surgery major the way? It could be the one in cardiology. «I had also evaluated neurology but I thought it would bore me, I just need to be a neurological patient» he laughs. And then there’s her boyfriend Daniele (“we’ve been together since before the diagnosis, he’s always with me”), her sister Laura, who lives in Naples, and with whom “we dream of giving life to a shelter for abandoned animals”. The passion for dogs and a little gym. Contacts with other people with multiple sclerosis, including on Facebook («because between patients we understand each other immediately and sometimes better than with a relative»). Visits with his neurologistCarlo Pozzilli, at the Sant’Andrea in Rome. And every six months, an MRI: «Every time unfortunately there are some new injuries. And, in February of last year, I already had a relapse ».
The fallout, Valentine’s Day
It’s Valentine’s Day, Angela recalls («Yes, I have a bad relationship with holidays»). A Valentine’s Day in the middle of a dark period: «My father was hospitalized in Rome, for a double bypass. My beloved dog was dying. And suddenly my uncle died: I tried to hold on, I didn’t say anything to my father and I went to the funeral. But I was so sick I couldn’t walk.” The physique collapses: the pains in the legs, above all, become very strong. “They had to change my treatment: this saddened me a lot. Just four years after diagnosis, the disease is already progressing: that’s it”.
The new therapy, activated after that relapse (or recurrence), helps to keep the pain in the legs and back under control, which especially affects her during the most intense days, or at night. The “shakes” to the head, as Angela calls them, which are short but very annoying. “I’m learning to live with it. If it goes wrong, I say to myself: “okay, that’s it for today”, and I go to bed early. Pain, tiredness, fears: I don’t trust these things».
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