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I was diagnosed with Nephrotic Syndrome at the age of 2.5 after my mom took me to six different doctors to understand why I was waking up swollen and puffy. While I don’t remember every exact detail, I vividly remember being in the hospital constantly. Growing up in the Caribbean, medical resources were limited, and so were the doctors, so hospital visits were a regular part of my life. In fact, I spent just as much time in the hospital as I did at home.
But more than anything, I hope that my story helps someone else feel seen and supported in their own fight.
Socially, dealing with Nephrotic Syndrome was tough. As a child, it was hard to explain to my peers why I was sick but not contagious. Many of them thought I was a walking germ factory, and that sense of isolation made things even harder. But through it all, my support system was absolutely incredible. My mom was my rock—my backbone—through everything. She had this magical ability to make hospital visits feel a little less daunting and to take the pain away in a way that only a mother can. She was always there, making sure I knew I wasn’t alone.
If I could offer advice to anyone—whether they are kids, teens, adults, or anyone facing a similar challenge—it would be to find your backbone. That one person (or people) who will be your support system, your strength, and your encouragement. It doesn’t always have to be family;it could be a friend, a mentor, or someone who truly understands. And if you ever feel like you don’t have that, I want to offer myself as a shoulder to lean on. I understand the loneliness that can come from lying in that hospital bed, feeling like you’re the only one going through it. I want to make sure that no one feels that isolation.
My hope for the future is to raise more awareness about Nephrotic Syndrome and the impact it has on people’s lives. I want others to understand that this disease is more than just a medical condition—it’s a lifelong journey that affects every aspect of life. For my own health, I hope for better treatments, more research, and a cure. But more than anything, I hope that my story helps someone else feel seen and supported in their own fight.
