The story of Sarah
From the beginning, my journey was anything but typical. My parents pushed for answers. It wasn’t until I was two years old that I received a diagnosis: Noonan Syndrome.
Living with Noonan Syndrome meant that from an early age, my life revolved around medical appointments and therapies. While my classmates were learning to read and ride bikes without training wheels, I was learning how to navigate a world that wasn’t built for people like me.
School was a challenge—not academically, but logistically. The education system wasn’t built for students with disabilities and certainly not rare disorders. Accommodations were rarely granted without a fight and I had to learn early on how to advocate for myself, explaining my condition repeatedly to teachers who often didn’t understand or dismissed my needs.
My health worsened in my teens, I went from missing the occasional day of school to barely attending at all. It was a gradual shift, but eventually, I couldn’t keep up. When I was finally well enough to return to school part-time two years later, I was hopeful for a fresh start. But then COVID-19 arrived, shutting everything down again. Just as I was getting back on track, the world paused.
Despite these challenges, I pushed through. I sat my Leaving Cert in 2022 and secured my place in my dream course: Medicine at the University of Galway.
My desire to become a doctor wasn’t only about the subject itself—it was about the experiences I had as a patient. Over the years, I encountered many healthcare professionals who didn’t take the time to listen or understand. Some were dismissive, others indifferent.
I wanted to change that. I wanted to be the doctor who listens, who takes the time to hear their patients, even when they don’t have all the answers.
Living with a rare disease has been challenging, but it has shaped who I am. There is still so much work to be done and so many people left unheard.