When I was diagnosed in 2015, I had already been misdiagnosed several times and felt like time wasn’t on my side. I had a desperate need for answers but nowhere to turn. Even after having the correct diagnosis, I felt like it was all unreal, and really too “crazy” to comprehend. 

Diagnosed by my 3rd opinion, I was apprehensive listening to what he was telling me and incredibly scared with the seriousness of it all. He referred me to a fourth doctor—an endocrinologist at a major hospital. Still, everything I was hearing sounded like something out of a dramatic movie. This couldn’t be happening to me!

One in a million are diagnosed a year, only 10% survive. Those were the statistics I was given. I was terrified. My doctor admitted there wasn’t much information available and gave me just two websites to look up. I didn’t want to Google at first—it all felt too overwhelming. But eventually, I gave in. I had to understand what was happening to my body. I needed answers. I needed to know how to survive.

My first thought of not wanting to Google was gone–now I wanted all the information I could get to make an informed decision on my life, on living! My head was spinning. I had so many questions, and hardly any information. All I had were two websites, each listing ten facts. Ten facts to explain my entire life-changing diagnosis.

I had friends and family supporting me and trying their best to understand what I was going through but I felt so alone. One in a million. I had so many questions and just wanted someone to talk to that would understand all my fears, someone that understood what I was going through. I wanted to connect with others like me, I wanted to hear about their journey to gain hope for my own. 

That was ten years ago, before the Pheo Para Alliance existed.

It wasn’t until August 2020- during the first Pheo Para Alliance Awareness week – that I discovered I wasn’t alone. I was searching online for information about complications I was having post pheo and I happened to come across the Alliance’s awareness event on Facebook. I decided to join the live event. It was short, just a few minutes long, but in that the feeling of isolation was fading and the hope of so much possibility. 

After that first event, I started attending support meetings and webinars. I was learning more, finally, and—more importantly—I was meeting people who understood. I heard their stories and realized just how different each of our journeys were, yet how similar we were in our need for answers, for understanding, for connection. As much as I would never wish these tumors on anyone, I felt so relieved to talk with others who truly got it. People who didn’t need me to explain or translate what I was feeling. People who had lived it too.

Somewhere along the way, I realized I could be that person for someone else. I could be a connection to someone else and I became a patient support volunteer with the Pheo Para Alliance. I’m thankful for the chance to share accurate, up-to-date medical information—but also to simply be someone others can talk to when it all feels overwhelming. I’m deeply grateful to the medical professionals who share what they know, and to the Alliance for making that knowledge accessible. Because of them, I feel confident passing on what I’ve learned, helping others become informed and active participants in their own care. 

I used to feel like one in a million—isolated and scared. But now I know I’m not alone.

Through the Pheo Para Alliance, I’ve found support and a sense of belonging. I’ve learned that even the rarest journeys don’t have to be walked alone.

I am one in a million.

But together, we are a million strong.