Yusra Momade (english version)

 
I used to think our lives were written in our genes, like a script we inherit without choice, our eye color, our height, our laugh. Then scleroderma entered my life, and suddenly the script flipped, leaving me asking the same question over and over: Why me?
Before the diagnosis, my world felt wide and familiar. I had routines, dreams, and long, thick hair I loved brushing. One day, I remember sitting on the bed, defeated by my hairbrush, pulling my fingers helplessly through strands I could no longer manage. When my therapist suggested cutting it short, little did she realize that all my dreams, hopes, and even my will to live felt cut short with it.
Instead of asking for help and being vulnerable changing the shoes seemed like a better idea. It felt easier to change my life than to ask for assistance. And with that, all the colorful, joyful shoes vanished, replaced by quieter ones that asked less of me because I was too afraid to ask more of anyone else.
Acquiring a disability through scleroderma made me feel like a new employee on my first day at a firm, foolish with basic things. The awkwardness of not sitting on the couch with the rest of my friends but instead pulling up a chair further away from the soft carpeted floor because how do I explain to them that I am unable to take off my shoes?
As a result, just like that chair, I distanced myself from everyone and everything. My friends would laugh about something, and I would smile along, but inside I kept thinking: Will I ever feel like I belong here again? That simple chair became the symbol of my new life. And slowly, the distance between me and others grew, with chairs between us, spaces between us, and unanswered questions between us.
I often say this to people I meet, when you’re born with a disability, your family grows around it. They mold themselves to your needs from day one. But when you acquire one, it’s as if the whole family is shoved into a new life without warning, without training, without instructions. As if my whole family became disabled overnight, in their own way. 
Those hands that supported us as children, that once helped us take our first steps now, as an adult,it felt wrong to ask for that same support again. My mother, once soft and steady, became hesitant around me. She would watch me with eyes full of questions she didn’t know how to ask. I didn’t know how to answer them. My reflection became a stranger. I took down all the mirrors in my room.I didn’t want to see the tightness in my skin, the tiredness in my eyes, the version of me that looked like she was fading. My mother pretended not to notice the missing mirrors, but I could see the sadness hiding behind her forced smile. 
Family trips soon stopped feeling like trips and turned into concern missions. The moment we reached the airport, I’d be taken away from my family, because special assistance passengers aren’t given the liberty to wander through duty-free and sip freshly brewed coffee like everyone else. Instead, we get stored away, kept “safe” but just punished in a white room for not being like everyone else until it’s time to board. Only then are we reunited with our families again, as if nothing had happened.
My family didn’t know how to handle the shift. Suddenly every outing became a mission. Are there stairs? Will the bathroom be too far? Will she get tired? Will people judge us? There’s nothing like a public space to make you feel exposed. I still remember the first time my unlicensed parents pushed my wheelchair through a mall. We bumped into rails, displays, even a poor mannequin. My frustration boiled over, I yelled, they panicked, and people stared. Not at the bumps, but at us. And that’s when I realized something painful, my disease didn’t just change me, it changed how the world looked at my family. It changed how my family looked at the world.
And then came the comments from outsiders, the ones that hit harder than they should:
“Why is she using the disabled toilet when she looks perfectly fine?”
“Look at this perfectly fine young girl not giving her seat to a senior citizen.” My family heard these echoes too. Sometimes they stepped in to shield me. Sometimes they did not know how. And sometimes, the silence between us grew heavy, full of things we all felt but could not say.
But here is where the story changes. Slowly, quietly, my family began to learn the unspoken language of this disease. Not through genetics, not through medical books, but through trial, error, patience, and love.
One day, I noticed the cupboard had new handles so I didn’t have to strain my hands to open them. Another day, my breakfast was already laid out on the counter, because they knew holding heavy things hurt me. The eggs moved from the top shelf of the fridge to the middle my mother didn’t say anything about it, but I knew she had thought of me. No big announcements. No dramatic moment. Just silent adjustments.
That’s when I learned something deeper than any biology lesson could teach,
Genes might explain how a disease begins, but they don’t explain how a family grows around it.
Scleroderma tightened my skin yes, but it also softened parts of my family I had never seen before. It made us speak differently. It made us understand each other without words. It made us closer in strange, unexpected ways. So is it all in the genes? The answer is no. The disease may have started in my body, but its effects rippled through every room of our home. It stretched us, challenged us, broke us in some places, and then gently stitched us back together in others. And somehow, in all that breaking and mending, we became a new kind of family, one shaped not by genetics, but by resilience, patience, and love that learned how to adapt.
In the end, scleroderma did not define our family it revealed us, reshaped us, and taught us that love does not follow a script.

Yusra Momade is a 29 year old Architect based in Lisbon, Portugal. Brought up in lushful Mozambique & tropical city of Malaysia she grew up surrounded by lakes and forests. Yusra now lives with her parents, and she spends much of her free time broadening her knowledge and taking courses as well as workshops with the world's best tutors as she is planning to open a design studio in Lisbon based on Design for Inclusion. Her hobbies include, upcycling furniture and experimenting new recipes.
She first learned about the Stene Prize through the rheumatologist from her medical team in Portugal. Intrigued by the theme and the opportunity to reflect on issues she works with daily, Yusra decided to participate. The contest offered her a meaningful way to blend her professional experience with her interest in storytelling and public advocacy.
Yusra hopes that her essay contributes to ongoing conversations within the field and encourages readers to consider practical solutions for a future that makes everyone feel included and loved.