September 9th 2026
More Than My Rare Disease
If you ask me what keeps me going, the answer is easy: the kids.
Every morning, I walk into our preschool and say, “Good morning, busy bees,” and “How are my teddy bears today?” They run up for hugs, ask me to read with them, and remind me why I love what I do. It’s the best job in the world. It gives me purpose and gets me out of bed every morning.
For more than 20 years, I’ve had the privilege of leading a preschool that feels like an extension of my family. I started as an involved parent, then stepped into the director role in 2003 and never left. I love the energy that comes from walking into a classroom full of curious, excited children.
That’s why, no matter what life has thrown my way, I keep coming back.
In 2007, my life changed unexpectedly. As I was preparing to begin treatment for breast cancer, doctors discovered I was also living with paroxysmal nocturnal hemoglobinuria (PNH), an ultra-rare blood disorder affecting only a handful of people per million.
Suddenly, I was navigating two diagnoses at once. I remember thinking, “Okay, this is going to be a challenge.” That was the beginning of my journey with PNH.
It was scary. It was overwhelming. But what I remember most is not the fear. I remember the people who showed up for me.
I’ve often said that I’ve been cursed with health issues but blessed beyond measure with support. My family, friends, co-workers, medical team, and community have carried me through some of the hardest moments of my life.
"That's why, no matter what life has thrown my way, I keep coming back."
One constant support has been my team at PANTHERx Rare®.
When you live with a rare disease, managing treatment can feel like a full-time job. Between doctor’s appointments, hospital stays, work, and everyday life, something always needs attention. That’s why having people in your corner who genuinely care can make all the difference.
Over the years, I’ve gotten to know several members of the PANTHERx team, but my patient care coordinator, Bonnie, has become someone I truly look forward to hearing from. What started as refill calls evolved into real conversations. She asks about my preschool, the children, my family, and how I’m doing beyond my diagnosis.
I’ve joked before that PANTHERx must have some special training on how to be the kindest people in the world. Every time I call, I’m reminded that I’m not just another patient. They know me, celebrate my victories, and help me through difficult moments.
During hospitalizations and surgeries, I never had to worry about whether my medication would arrive on time. Bonnie and the PANTHERx team worked with my family, coordinated deliveries, and helped ease one more source of stress when I needed it most.
"Every time I call, I'm reminded that I'm not just another patient. They know me, celebrate my victories, and help me through difficult moments."
When you’re living with a rare disease, those relationships matter. Knowing someone is rooting for you gives you confidence on the days when you need it most.
When people ask me where I get my resilience, I usually don’t know how to answer. A grandparent at our preschool recently asked me, “Where do you get your grit?”
I’ve thought about that question a lot. The truth is, I’ve always been a glass-half-full person. I love life. I love my family. I love my friends. I love what I do. And when you’re surrounded by people who believe in you, it’s easier to believe in yourself.
I learned that strength isn’t pretending everything is okay. For many years, I felt like I had to put on a brave face. I’d walk out the front door thinking, It’s showtime. I wanted everyone to see me as capable and put together. I didn’t want people to know when I was struggling.
Eventually, I realized that approach wasn’t helping anyone, including me.
Today, I’m more willing to ask for help. I’m more willing to admit when I’m having a hard day. Ironically, some of my greatest teachers have been the children at my preschool. When I returned to work after a lengthy recovery, I wasn’t sure how they would react. I worried I might make them uncomfortable.
Instead, they welcomed me back with hugs, questions, and an incredible amount of acceptance. Their curiosity came from a place of love. Their questions opened conversations. Their compassion helped me heal in ways I never expected.
They’ve helped me accept what’s happened to me and reminded me to focus on the joys right in front of me. That’s the gift of working with preschoolers. They don’t dwell on what’s wrong. They focus on what’s right in front of them. I try to do the same.
When people living with rare diseases ask for advice, I usually tell them to start small. Think about three things that bring you joy. Don’t spend all your energy thinking about what you can’t do. Think about what you can do. Give yourself grace. Let yourself have hard days, because everyone has them. And if those hard days start piling up, reach out. Talk to someone. You don’t have to carry it all by yourself.
For me, that life is waiting every morning inside a preschool classroom, surrounded by my students who remind me what joy, resilience, and hope look like every day.
Living with a rare disease is different, especially when it’s a disease most people have never heard of. But I’ve worked really hard not to let PNH become my whole life.
It’s part of my story, but it’s not the whole story.
– Suzie Johnson
PANTHERx Perspective: More Than a Refill
There are some patients you never forget. For me, one of those patients is Suzie Johnson.
As a patient care coordinator at PANTHERx Rare, I spend my days helping patients access the medications they need to manage complex rare diseases. My role involves a lot of coordination. I connect with patients, caregivers, physician offices, and insurance companies to help medications arrive on time and prevent anything from falling through the cracks.
Every patient has a story, and while some interactions are brief, others leave a lasting impression.
I still remember our first conversation. Like every call, it started with the standard verification process. Before long, though, we were talking like old friends. She was warm, friendly, and funny. What was supposed to be a medication refill call turned into a much longer conversation about life, family, and the years she had spent working with young children.
From the very beginning, she made an impression on me.
When I think about Suzie, one word immediately comes to mind: resilience. She has been through experiences that would make many people give up. Instead, she continues to show up for her family, her community, and the children who depend on her every day.
What stands out is her spirit. Every time I call, she answers the phone with optimism, laughter, and a genuine interest in how everyone else is doing. She talks about her preschool students, her family, and the moments that bring her joy. Even on difficult days, she manages to focus on what matters most.
One of the things I admire most about Suzie is her determination not to let her diagnosis define her.
To the families at her preschool, she is a beloved director. To her students, she is someone who greets them with excitement every morning. To me, she is one of the strongest people I have ever met.
As patient care coordinators, we often see the behind-the-scenes realities of living with a rare disease. During one hospitalization, her daughter became a strong advocate, helping coordinate care and ensuring Suzie continued receiving treatment. Together, we worked to make sure her medication reached her, lifting one burden from her family’s shoulders.
Moments like those remind me why care coordination matters. Patients living with rare diseases already carry so much.
The truth is that my responsibility starts with helping with access to medication, but it doesn’t end there. Sometimes patients need someone to listen. Sometimes they need reassurance. Sometimes they just need a friendly voice on the other end of the phone.
Patients often tell us that they feel like we are rooting for them. For Suzie, that’s absolutely true. Thank you for reminding all of us that a rare disease may be part of someone’s story, but it is never the whole story.
– Bonnie Hoolahan, Care Coordinator, PANTHERx Rare
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