September has always been a special month for me — it’s the month I was born! For years it was filled with celebration, cake and memories of family and friends. But in the past two years, September has also become a month I dread. It’s no longer just about balloons and birthday wishes; it’s also about uncertainty, paperwork and fighting for my life.
For three long years, I battled not only a disease but also a system. I fought to be approved for the medicine that slows down the progression of transthyretin amyloid cardiomyopathy (ATTR-CM) — a rare and life-threatening disease. For three years I felt like the insurance company was telling me, “You’re not worth saving.” Every form, every phone call, every appeal felt like I was begging for my life. And as I waited, I thought of my father’s journey. He lived only three years after his diagnosis. That clock was always ticking in the back of my mind.
When the approval finally came, I felt something I hadn’t felt in a long time: hope. Hope that I had been heard. Hope that I had been seen. Hope that maybe I had a little more time to breathe. But that relief comes with an expiration date. Every year, the process starts again. Every year, I hold my breath and pray nothing changes — no new policies, no new tests, no new reason for someone behind a desk to decide my life is too expensive. It’s exhausting. It’s scary. And it feels so far out of my control. But that’s where God gently reminds me of the truth: I was never in control to begin with.
I believe that the only One who truly holds my life, my future, my health and my days in His hands is Jesus. And in that truth, I can find rest. I can keep walking, keep fighting and most importantly, keep trusting, because I believe God’s promise that it is all part of His plan for me — a plan that includes a future. Even when the paperwork stacks up and the phone calls feel endless, I hold on to that promise.
But I also believe God has given me a mission in the middle of this fight: education. Too often, rare diseases are faceless statistics, and people don’t understand what it’s like to live with them. That’s why I speak up. That’s why I share my story. Because when people see a real face, a real story, a real life — something changes. Compassion grows. Awareness spreads. Action starts.
If I could, I would travel the world to tell people about ATTR-CM. Not because it’s easy to talk about, but because I believe stories like mine matter. They shine a light on the struggles, the victories and the faith it takes to keep going.
So, as September rolled around again, I celebrated my birthday, celebrated another year of medicine. But I also took time to reflect. I remembered the battles I’ve fought, the prayers I’ve prayed and the faithfulness of God through it all. And I keep moving forward — educating, advocating and trusting that no matter what comes, He’s already gone before me.
Because at the end of the day, I’m not just living with a disease. I’m living with hope. And that’s worth sharing.
Sign up here to get the latest news, perspectives, and information about ATTR-CM sent directly to your inbox. Registration is free and only takes a minute.
