Naman’s Story

Hi, my name is Naman, and I’m from India.

I was diagnosed with Wilson’s Disease almost seven years ago, when I was around 13 years old. However, my symptoms had started about a year before my diagnosis. I began experiencing frequent cramps and stiffness, especially in my legs and hands. Running became difficult, and I started walking with a slight limp. As time went on, more symptoms appeared.

My hands would start shivering while writing, making it impossible to write more than one or two pages. My voice also started deteriorating, and my speech lost its clarity.

My family noticed these changes and took me to a neurologist on someone’s recommendation. Thankfully, after multiple tests and consultations with different specialists, I was diagnosed within just three days. The doctors found that copper had accumulated in my brain, liver, and eyes. I still remember spending my birthday in the hospital, going through tests and appointments.

After my diagnosis, I started medication immediately and had to visit the hospital every 15 days for follow-up appointments. The first five or six months were the hardest period of my life. Even after starting treatment, my condition continued to worsen for a while. I struggled to eat properly, couldn’t perform many daily activities without help, and kept losing weight. Within just three months, I lost around 9 kilograms and weighed only 27 kilograms at the age of 14.

My studies were also badly affected. I found it difficult to remember even simple things, and concentrating became a challenge. Every day, I had to take around eight or nine pills and completely change my diet by avoiding high-copper foods. During that time, I constantly questioned my life.

There were many days when I questioned everything. I wondered, “Is this how the rest of my life is going to be?”

Thankfully, things slowly started getting better. Recovery wasn’t quick; it took almost three to four years before I truly felt that my life was getting back on track.

Eventually, I returned to my studies like any other student. Although I still felt that my brain wasn’t functioning the way it had before my diagnosis, I refused to let that define me. I worked hard, performed well in high school, cleared competitive entrance exams, and earned admission to one of the best colleges in my country. Even today, I consider that one of my greatest achievements.

I still live with some challenges. My memory and recall are not as strong as they used to be, and I continue to have speech clarity issues. Sometimes my voice affects my confidence during presentations, job interviews, and while expressing my thoughts.

These challenges haven’t completely disappeared, but I’ve learned that they don’t have to define who I am or limit what I can achieve. Wilson’s Disease is still a part of my life.

One thing that has helped me throughout this journey is perspective.

During my regular hospital visits, I met people living with conditions such as cerebral palsy, paralysis, and other life-threatening illnesses. Watching them fight their battles reminded me that everyone carries struggles that others may never see.

Instead of asking, “Why me?” I slowly began asking, “What can I still do with the life I have?” That change in mindset helped me move forward. It inspired me to stop focusing on what I had lost and instead focus on what I could still achieve.

The unwavering support of my parents, family, and friends also gave me the strength to keep going during my darkest days.

If I could give one message to someone who has just been diagnosed with Wilson’s Disease, it would be this: Be patient and don’t lose hope. The beginning is incredibly difficult, but things do improve with time. Recovery may not bring you back to exactly where you were before, but life can become meaningful, fulfilling, and full of opportunities again.

Stay consistent with your medication, take care of your health, trust the treatment process, and keep believing in yourself. This is just one phase of life; it does not define your future.

Wilson’s Disease changed my life, but it didn’t take away my dreams. If my journey has taught me anything, it’s that our diagnosis may become part of our story, but it never has to be the end of it.