I am Elisabetta, and I am not my illness

I grew up in Rome, but at the age of 9, after my father's death, my family and I moved to Pisa. As an adult, I returned to Rome where I worked, but following the illness at the age of 45, I moved back to Pisa even though my heart is in Rome, where I have friends. I am receiving treatment at San Raffaele, but I continue to be monitored at the Clinical Center of San Camillo.

Life changing diagnosis

My life changed in 2014. In 2004, I was diagnosed with multiple sclerosis. However, the symptoms of the disease date back to 1992 when I lost sight in one eye. The first step I took was to see an ophthalmologist. I was dismissed with the diagnosis of "cold stroke." But the symptoms persisted, and things were getting serious. I then went to the eye hospital. After 3 months, I had an MRI, but nothing significant emerged from the report except for a small spot. I sought treatment at Gemelli. My vision immediately improved. In '94, while showering, I lost sensation in my leg. I had no feeling. The next morning, I couldn't walk anymore. I had no sensation from the navel down. I moved from Rome to Pisa, where my family was. I started treatment with cortisone. After a few weeks, I had another MRI. The spot had disappeared. The analysis of the cerebrospinal fluid was negative, and I was discharged with a suspected diagnosis of multiple sclerosis (MS). At that time, the disease was not well understood. Within 20 days, thanks also to rehabilitation, I started walking again. I was 24 years old. I only received the true diagnosis 10 years later.

A changing diagnosis

In 2004, in Pisa, despite living in Rome and feeling well, so to speak, because I still couldn't see from one eye, I underwent tests again: diagnosis of MS. In 2006, I traveled to Jordan. My legs gave out. I returned to Pisa: cortisone therapy continued along with interferon therapy for multiple sclerosis. I started feeling better after about a month. In 2013, I lost vision in my right eye. I called the neurologist at San Camillo, cortisone treatment again, and after a week, I could see again. I experienced several relapses. On April 19, 2014, after another hospitalization because this time I couldn't get out of bed, after various tests, I was diagnosed with Devic's disease. I was desperate. Professor Gasperini, my treating physician, consulted with his colleagues at San Raffaele in Milan. He sent me to Professor Comi. I underwent all the tests again. They confirmed neuromyelitis optica, also known as Devic's disease. A rare disease with some characteristics like multiple sclerosis. I started taking the available medications at that time; there weren't many for a rare disease. In 2015, I changed my therapy, and slowly I managed to move forward.

Life since diagnosis

In 2018, after leaving my job as an event’s organizer within hotels following the diagnosis, I took a competition for the Nuclear Physics Institute, which has a branch in Pisa. I started studying again, and I won. But I still dream of returning to my old job, which I loved so much. I dream of a house near a lake with a ceramics workshop. A workshop and a B&B. I love working with ceramics, shaping and being in contact with the earth has been and is my therapy; it relaxes me, and when I manage to carve out my space to "build," I feel happy. I make many ceramic works that I then sell at markets. Independence above all. I live alone in a house in Pisa. Every month, I take my car with special controls and treat myself to a trip to Rome to meet my friends.

A rare person

When the disease is rare, you feel a bit rare too. I thank AISM for including me in the focus groups. Through interaction with other people, I now accept the disease a bit more. Knowing people who have the same condition as you help. For 8 years, I put Elisabetta aside and put the disease first. Now it's different. I'm working a lot on myself. I am Elisabetta, and I am not my illness. Accepting the disease is a difficult journey, but I'm trying. It's time to become aware. I take meditation courses. I do what I can at my own pace. When I can, I adapt to others' choices, for example, going out for pizza, going to the movies, or traveling with friends. I would like it if others could also adapt to me, doing things where I can also participate. Sometimes I must decline invitations because of architectural barriers, but many times, the barriers are within us. In the 3rd millennium, everything should be accessible, but it's not always the case, and sometimes you feel powerless.