The Silent Battle: Living with GSD Type 1A
Imagine living in a world where your body doesn’t have the energy to function like everyone else’s. A world where food isn’t just a comfort but a lifeline—one missed meal could send you into a crisis. This is the reality of Glycogen Storage Disease Type 1A (GSD 1A), a rare genetic condition that has shaped every aspect of my life.
Most people don’t think twice about going hours without eating, but for someone like me, that isn’t an option. My body lacks the enzyme needed to release stored glucose, which means my blood sugar can drop dangerously low within hours. The simplest things—sleeping through the night, forgetting to eat, or getting sick—can turn into life-threatening situations. I live on a constant schedule, tied to strict feeding routines and medical interventions just to survive.
Growing up, I struggled to explain my condition. When I was younger, all I wanted was to be like other kids—to join sleepovers without fear, to play outside without the exhaustion creeping in, to eat what I wanted without worrying about my blood sugar crashing. But GSD 1A doesn’t give you those choices. I had to learn responsibility early, always carrying emergency snacks, knowing the warning signs of a hypoglycemic episode, and navigating a world that didn’t understand what it meant to live with an invisible illness.
The hardest part isn’t just the physical toll it’s the isolation. How do you explain to people that food, something so simple for them, can be your greatest fear and your greatest need at the same time? That feeling of being different, of watching others live freely while you calculate every bite, every hour, every risk.
But despite the struggles, GSD 1A has made me resilient. It has taught me the power of advocacy, of speaking up for those who live with rare conditions that the world often forgets. I’ve had to fight for proper care, for understanding, for awareness. Every hospital visit, every emergency, every sleepless night has shaped me into someone who refuses to be defined by an illness.
This Rare Disease Day, I want people to know: We are not fragile—we are fighters. Our journeys may be different, but our strength is unmatched. If you’ve never heard of GSD 1A before, let this be your reminder that rare diseases deserve attention, support, and most importantly, compassion.
To those living with GSD, to the parents staying up at night ensuring their child’s blood sugar stays stable, to the friends and family who stand by our side—you are not alone. Together, we can make the world understand that rare isn’t just a label. It’s a story of courage, perseverance, and hope.
Let’s raise awareness, not just today, but every day. Because our stories matter.
Notes from AGSD-UK
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