Mahi: Junctional 

Epidermolysis Bullosa, a two-word diagnosis that I was given at birth. EB, when translated, means “blistering of the skin,” which, after living with it for 23 years, I can confidently say barely scratches the surface of what it truly entails. When most people think of skin, they think of the outermost layer that coats our bodies. It’s the first thing we see in the mirror, the barrier that separates us from the world. But surprise, skin is the largest organ of our body, and there’s much more than meets the eye. Beyond the 18 square feet that cover our extremities, there’s also the skin that lines our mouths, our eyes, our teeth and nails (you heard that right—they also involve skin-related proteins), and in my very rare case, my airway. At a year old, my larynx was millimeters away from closing up completely, and I had to undergo a tracheostomy procedure to ensure I could continue breathing. 22 years later, and my tracheostomy tube is still the friend I live with and I’m quite grateful for this friend because it has given me a second chance at life.

While EB affects many aspects of my day to day life, I do my best not to dwell on the struggles. Sure, I could spend all day talking about the pain, the bandages, the challenges that come with a body that sometimes feels more fragile than it should. But that’s not the full picture. My life has been shaped just as much by the people who have stood by me as it has by the condition itself.

From the very start, my mom made a conscious decision: she would not treat me differently from any other child. She could have chosen to keep me at home, to shield me from the world, and no one would have questioned her for it. Homeschooling would have been the easier choice, maybe even the safer one. But she knew that keeping me in a bubble wasn’t the answer. Instead, I went to public school, just like any other kid. And that decision changed everything.

Being around my peers, I learned to view myself as just another student, just another kid trying to navigate childhood. I made friends who saw me for who I was beyond my scars. They didn’t see me as fragile or different—just as their classmate, their teammate, their friend. And through their eyes, I started to see myself that way too. It wasn’t always easy. There were stares, questions, moments of doubt. But each challenge made me stronger, more confident in my own skin—scars and all.

Of course, insecurities didn’t just vanish overnight. My croaky voice, a result of EB affecting my airway, has always been something I struggled with. It’s different, it stands out and it can be hard for some people to understand, and for a long time, that made me uncomfortable. But just like I learned to own my scars, I’ve worked on owning my voice, too. It may not sound like everyone else’s, but it’s mine. And I’ve realized that the way I speak doesn’t define me any more than the way my skin heals.

Despite all the physical challenges, there was one part of me that EB couldn’t touch: my mind. My cognitive abilities were never affected, and that meant I could push forward, learn, and dream just like anyone else. That independence led me to UCLA, where I decided to study molecular biology. I wanted to understand the science of cells, genetics, and research—not just for the sake of knowledge, but because I know firsthand how much a cure, a treatment, or even a small scientific breakthrough can change lives. People like me, with rare diseases, don’t just hope for progress—we depend on it. And I want to be part of that progress.

So here I am, at the start of this journey, looking ahead to a future in research. Not because I want to escape my condition, but because I know that what I learn, what I discover, might one day help others who walk a path like mine. And that thought? That possibility? It makes every challenge, every hardship, every moment of doubt worth it. Because my story isn’t just about what I’ve endured. It’s about what I choose to do with it.

-Mahi