My name is Sofia and this is my story.
Sofia
I am 20 years old, but I have already been through a lot. My mother had a difficult childbirth. When I was born, I went into a coma because I didn’t get enough oxygen. I recovered slowly, but the doctors said right away that they didn’t know if I would have health problems in the future.
Until I was five, I didn’t have any major problems. I started walking a bit later than other kids, but it was nothing to worry about.
In first grade, my teachers noticed that I wrote in a strange way. I would hold my right arm with my left hand to stop it from jerking, without even realising it. To me, it felt normal. The teachers told my parents, and they decided to take me to the doctor. We went to many visits because nobody could understand the problem.
Finally, when I was 5, a special hospital in Milan diagnosed me with dystonia in my right arm (a condition that causes involuntary muscle movements). We tried different medicines, but none of them worked. I became left-handed and learned to adapt. My arm never caused me much pain or trouble.
The doctor told me that if the dystonia did not spread to other parts of my body within five years, it would stay only in my arm.
Unfortunately, that is not what happened. After 15 years—which was two years ago—it appeared in my neck. At first, I thought it was just a stiff neck.
Around June 2024, when I was 18, I started feeling pain in my neck. I blamed the air conditioning. I went to a physiotherapist, who told me it was just a tight muscle and that it would go away soon.
I went to many sessions, but the pain did not stop. It was worse when I was standing up, but I felt better when I was sitting or lying down.
After about two months, things got worse. My neck started to turn to the left on its own, and I couldn’t control it. That is when I got really worried. I thought it might be connected to my arm problem. Inside, maybe I already knew what it was. I just tried to stay positive and told myself that the five-year safety window had already passed.
I decided to go back to my doctor in Milan. I was getting worse and my neck was having muscle spasms. She examined me and told me that it was cervical dystonia (dystonia in the neck).
Hearing those words out loud hurt so much. I felt like my world was collapsing. It was a feeling I had never felt before.
I had a total breakdown. I felt lost, and I was getting worse every day. I started wearing a neck brace to keep my head straight, but the spasms were very strong. Once, a spasm made me hit my head against the wall.
Because the neck spasms were so violent, my whole upper body would bend. This made it hard to walk or do simple things because I lost my balance. When I went out, I had to use a wheelchair, because sitting down made the spasms calmer. I even ate my meals lying down in bed. Those months were very dark. I was afraid I would never go back to my old life or be able to walk normally again.
The doctors told me about two options: a brain surgery called DBS (Deep Brain Stimulation) and botulinum toxin injections.
Soon after, I started the botulinum toxin treatment in Milan. We started with a very low dose so my body could get used to it, so the first time it didn’t really work. I also took a pill, but I stopped it after two months because of bad side effects.
During that time, I could only see the negative things. I was afraid the dystonia would spread to my whole body, and I was terrified of having surgery. Because I worry a lot about my health, these thoughts kept me awake at night.
However, I never stopped my physiotherapy and massages. I still do them today. They help relax my muscles, which is very important to combine with the Botox.
Slowly, after my third dose of botulinum toxin, I started to feel better. I noticed improvements.
I changed doctors, and now I go to Turin for my injections. We found the right dose for me. I get the shots every three or four months now, and I can say that I have taken my life back, almost like before.
With the help of a psychologist and some medication for my mood, I got better. I returned to my normal life, even though something inside me has changed.
For now, I am doing well. But I hope that one day, science will find a cure that doesn’t require surgery. You must never lose hope—that is the hardest part.
