A journey of resilience

The story of Munique

Hello, my name is Munique. I’m a 33-year-old Brazilian with a story that is both a testament to resilience and a journey through uncertainty. My life has been a continuous battle against Fabry disease, a condition I’ve lived with since I was born, showing symptoms when I was six, but I wasn’t diagnosed until I was 15. It’s a story of struggle, misunderstanding, and hope.

From a young age, I knew something was wrong. I experienced frequent pain, faced gastrointestinal problems, and felt like my body was constantly fighting against me. My childhood was marked by endless visits to various doctors. Many doubted my suffering, considering it a way to seek attention. But the pain was real, and the discomfort was constant. It was a lonely and confusing time, fighting against a mysterious illness that no one seemed to understand or believe in.

At 15, my life took a significant turn. I was finally diagnosed with Fabry disease. This diagnosis, though scary, was also a relief. It was an answer to years of unanswered questions and misunderstood symptoms. At 17, I began treatment. Slowly, things started to improve. The pain lessened, although I never felt like a normal teenager, something I longed for all my life.

However, my journey was far from over. At 22, a new challenge emerged: anorexia. This battle was different – it wasn’t just physical, but also mental and emotional. For three years, I fought against this eating disorder, trying to regain my health and well-being. Fortunately, with support and determination, I fully recovered. This period of my life was a testament to my strength and will to overcome obstacles.

Despite the victories, Fabry disease continued to cast a shadow over my life. About six years ago, the symptoms returned, not as intense as they were, but still significant. Pain and fatigue became daily battles, making it impossible for me to work or continue my studies. This ongoing fight is exhausting, not just physically, but emotionally and mentally.

In these difficult times, I found solace and purpose in raising awareness about this disease to the rest of the world. I manage a Facebook and Instagram page where I share information about Fabry disease. My goal is to help others understand this rare condition, whether they have been recently diagnosed, are trying to understand what a loved one with the disease is going through, or even if someone just stumbled upon my page and became curious, knowing someone with symptoms but yet undiagnosed. I also engage in hobbies like reading and writing, which bring me joy without draining my energy.

Despite the challenges, I remain hopeful. New medications for Fabry disease are being developed, and I am optimistic about the prospect of a better quality of life. I dream of doing more for people who share this condition, being a beacon of hope and a source of strength.

My journey with Fabry disease has been a roller coaster of emotions, pain, and triumphs. It has taught me resilience, empathy, and the importance of sharing knowledge and even one’s own battles. Through my story, I want to reach out to other people on similar paths, so they know they are not alone. Together, we can face the challenges and embrace the hope ahead of us.