Today is Rare Disease Day, a day that holds deep meaning for millions around the world—myself included. It’s a day dedicated to raising awareness for the rare conditions that many of us live with, often silently. It’s a day for recognition, for visibility, for breaking the stigma that surrounds illnesses most people don’t even know exist.
Rare Disease Day represents more than just a moment in the calendar; it’s a lifeline for those of us who fight daily battles that go unseen. It’s a reminder that we are not alone, even though it can often feel that way. It’s about acknowledging the strength it takes to navigate life with conditions that most people will never fully understand, and today is my opportunity to honour a beautiful young soul with Myasthenia Gravis who was blessed with her angel wings. Her amazing smile and gentle spirit will always be remembered and treasured. It is for her that I share this.
My personal journey has been shaped by a rare combination of conditions, each adding a layer of complexity to my life. I was born with a clotting gene disorder, mitral valve prolapse, and Ehlers-Danlos syndrome—conditions that affect my blood, my heart, and my connective tissues. As if that wasn’t enough, I also have Postural Orthostatic Tachycardia Syndrome (POTS), which means my nervous system struggles to regulate my blood pressure and heart rate properly. Over the years, my body has had to fight in ways most people never see, and now, as a result of these conditions, I live with myasthenia gravis, an autoimmune neuromuscular disorder that adds another layer of unpredictability to my days.
Living with multiple autoimmune and genetic conditions means that every single decision I make is carefully measured. There is no such thing as an easy day. Some mornings, getting out of bed feels like running a marathon. A simple outing requires careful planning—how long will I be standing? Is there somewhere to sit if I get dizzy? Will I have access to water, shade, rest? And yet, despite all this, the world keeps moving, and people forget. They forget that just because I look okay doesn’t mean I feel okay.
That’s the thing about invisible illnesses—the invisibility. If people can’t see it, they struggle to comprehend it. There’s an unspoken expectation to perform “normality,” to push through discomfort, to not make a fuss. But what they don’t see is the price paid later—the exhaustion that follows, the days spent recovering from a single evening out, the pain masked behind a smile. The stigma is real. It’s in the offhand comments: “But you don’t look sick.” “You were fine yesterday.” “Maybe if you just exercised more.” It’s in the way people assume you are exaggerating, seeking attention, or using your condition as an excuse.
The reality is, rare diseases affect every part of life. They shape relationships, careers, aspirations, and even the simplest daily tasks. Each person’s experience with these conditions is unique—there’s no textbook case, no one-size-fits-all treatment. That makes understanding even harder, not just for outsiders but for those of us living with them. Some days, even I don’t fully understand what my body is doing or why.
Despite all of this, I don’t regret the way I was born. My journey, though filled with challenges, has taught me to treasure life in a way that many never will. It has given me a deep appreciation for the fleeting beauty of each moment, for the strength found in vulnerability, for the small victories that others take for granted. I’ve learned to live life full speed, not because I ignore my limitations, but because I refuse to let them define me.
I am endlessly grateful for the people who stand beside me—my incredible family, my husband, Tim. They see me on the hardest days, when the exhaustion is unbearable, when the pain is relentless. They understand when plans change at the last minute, when I can’t do what I hoped, when I need rest more than adventure. Their support is everything.
This deep understanding of life’s fragility and importance flows through my passion for Capegypsy. Sustainability, mindfulness, the beauty of the earth—these aren’t just business concepts to me. They are philosophies born from a life that knows how precious and delicate everything is, how often fleeting. I have learned that we must take care of the world around us just as much as we must take care of ourselves. We have to be gentle, be kind, be intentional. That is what I try to bring to Capegypsy, and that is what Rare Disease Day reminds me of every year.
So how can we honour this day? How can we honour those who have been blessed with their angel wings. We can listen. We can learn. We can amplify the voices of those living with rare conditions. We can advocate for better medical research, for policies that recognize invisible illnesses, for compassion in the workplace, in schools, in everyday interactions. We can remind people that just because you can’t see an illness doesn’t mean it isn’t there.
To everyone fighting their own battles, I see you. I hear you. And you are not alone.
Happy Rare Disease Day.
Take care,
Comments