The story of Nabila
Every experience in life serves a purpose. Living with Factor V Deficiency (Para-hemophilia), a rare bleeding disorder, has shaped my journey in ways I never anticipated. Years ago, I had the opportunity to work with patient advocacy organizations that uplift and support the rare disease community. It was through this work that I realized my own voice could make a difference—I could be an advocate for those like me.
Having an invisible disability often means facing skepticism. People assume that because I look “fine,” my condition isn’t real. I’ve been met with surprised looks and dismissive remarks, as if I’m exaggerating or seeking help. But it’s not in my head—I know my limitations, and I also know the consequences when I push beyond them. I can do things, but at my own pace, in my own way.
For years, I have tried not to be a burden on my family and friends during bleeding episodes. I’ve put on a brave face, hiding the pain behind a smile. But there have been times when I had to set aside my pride and say, “I need help.” Admitting this was never easy, but when I did, I was met with kindness, patience, and understanding. I’ve had hands to hold, shoulders to lean on, and support when I felt too weak to stand on my own.
Rare diseases can make us feel isolated, like we are carrying a weight no one else understands. But suffering is universal, whether physical or emotional. We all need help at some point in our lives. Recently and last year, when I experienced knee bleeds, I felt helpless, worried I wouldn’t be able to walk in the harsh winter. But help came—sometimes knowingly, sometimes unknowingly—from friends in this new country where I came with dreams of a better life.
Strength isn’t just about endurance; it’s about vulnerability. It’s about recognizing when we need support and offering that same support to others. The light we share with the world often comes back to us when we need it most.
Advocacy doesn’t have to be grand—it starts with honesty