A “stupid” illness. That is how Barbara Pritoni, 38, from Ferrara, Italy, defines multiple sclerosis. She describes the disease she has lived with since 1991 using an odd, somewhat unusual adjective, which does not go unnoticed.
“I say stupid because many consider people in a wheelchair as ‘different.’ Even if they don’t have full use of their legs that doesn’t imply they don’t have the same feelings. Stupid because many people don’t stop to understand us. For them, we’re individuals who should be pitied and felt sorry for. Stupid because it’s an illness that precludes many things that we’re actually capable of doing.” Pritoni wants to win this war. She will not resign herself. She will not give up hope. Sooner or later a cure for multiple sclerosis will be found. She is convinced of that.
And she firmly believes in the experimental treatment offered by Dr. Paolo Zamboni, who has already obtained clearance in Italy, and now Saskatchewan has said yes to clinical trials – the first province in Canada so far. Pritoni tells us her story from the beginning – from the appearance of the first symptoms, to how her life changed, and how this illness has transformed her body. “I’m not as beautiful as I once was,” she jokes. “Even if everyone tells me the opposite.” But Pritoni still has all that beauty and more. In that strength, that optimism that exudes through her voice that is albeit marked and weakened by the progressing illness. She was just 21. It was 1991.
“I started to have tingling sensations from the knee down. I was in the hospital for two weeks. Then other symptoms appeared, until I was hospitalized again in the neurology department. Following the spinal tap (Editor’s note: lumbar puncture), the disease was diagnosed, which at the time they called a syndrome affecting myelin sheath. I didn’t know what that meant and I always hoped I’d get better. Two years later, they gave me the final diagnosis. I had multiple sclerosis.”
Up to four or five years ago, Pritoni was hopeful of not “becoming a vegetable. ‘Barbara, fight, fight,’ they’d tell me, ‘you’ll win this battle.’ ” Instead, the wheelchair won that battle. “I used to drive, go out. I was independent. Then, I had to stop,” she says. “But I’m always hoping for some new development, thanks especially to Dr. Zamboni who seems to have found a weapon that is able to slow or even stop the symptoms of the disease.” Pritoni currently lives with her aunt and uncle and will be soon moving in with her mother and brother. She’s a fighter, she says, but she admits to difficult moments – those times when she cries alone in the house. “Then they ask why I’m crying. ‘What’s wrong?’ ‘What happened?’ Stupid questions, but I know they’re trying to help, to offer a comforting word,” she says. “I’m no longer able to eat or drink by myself. Unfortunately I can no longer write – something I really enjoyed doing. Now I write three characters, then my handwriting becomes illegible. I can’t see very well any more. I wear glasses and I view the computer monitor with one eye closed and the other open.” Pritoni worked until 1999. “My disease didn’t preclude contact with others,” she tells us. “Then it worsened. I also worked as a secretary at a rehab gym, irony of fate. You know, ‘invalid’ here in Italy is a bad word. ‘Disabled’ already falls in the category of ‘poor thing.’ ” In other words, there are too many barriers to overcome. As the illness worsened, she contacted Zamboni with the help of her brother. A few years ago, Pritoni underwent an operation – a sort of pre-testing.
“Dr. Zamboni tried dilating the jugular veins that rise up from the groin,” she explains “up to the one that was blocked, to the shoulders and ear that still hurt a lot. But due to my stubbornness, I had ruled everything out. In reality, Dr. Zambino would not have been able to do this type of procedure because it would have preceded the (prerequisite) experimentation. There are many doctors who consider him a visionary. Until he met Doctor Fabrizio Salvi who believed in him. He understood that veins were implicated in this type of illness. And he gave him the opportunity to act and intervene. But I wanted to talk about this operation to other people in my same condition. That was a mistake, evidently. After the operation, I was better but confused. I thought it was just a temporary thing and that a single operation was enough. Instead, it’s a long process. And that’s how my descent to the wheelchair began.” For a while after the procedure Pritoni began to walk with crutches and had decidedly improved. And she felt more independent. “But, as Dr. Zamboni himself told me, I’d require another more detailed and thorough operation,’ she says. Dr. Zamboni is both on the side of the patients and the doctors, and for me he’s a great man,” concludes Pritoni, who managed to register on the waiting list for experimentation that will take place in Emilia Romagna.
Registration is now closed according to the www.ccsvi-sm.orp home page. Pritoni offers a message to everyone like her who is living with multiple sclerosis: “Don’t give up hope. Many believe a cure is just around the corner. I’d definitely like to know which corner. But we’ll win. I’m sure of that.”