Recently, I had the privilege of sitting down with Angela Soudi for one of the most honest conversations I have ever had publicly.
We spoke about our family’s journey with Von Hippel-Lindau (VHL) disease—from the years before diagnosis to the reality of living with it today. Nothing was off limits. We talked about fear, grief, anger, depression, and the thoughts that many people are too afraid to admit they have.
For years, I shared pieces of our story. The surgeries. The scans. The hospital visits. The advocacy work. But what often gets left out of rare disease conversations is what happens behind closed doors.
What happens when the appointments end.
What happens when the children are asleep.
What happens when the strong parent finally sits alone with their thoughts.
In this conversation, I spoke openly about the emotional toll of learning that I carried a genetic condition and then discovering that I had passed it on to my children. I spoke about the guilt that follows, even when science tells you there is nothing you could have done differently.
I spoke about the depression that can come with chronic uncertainty.
The exhaustion of always waiting for the next scan.
The fear that never fully leaves.
And yes, I spoke about the darkest moments—the moments when the weight of everything felt unbearable.
Those are difficult subjects to discuss publicly. Yet they are realities that many patients and caregivers quietly experience.
One of the biggest misconceptions about resilience is that resilient people do not struggle.
The truth is the opposite.
Resilience is not the absence of pain.
Resilience is continuing despite the pain.
It is crying in the parking lot before walking into the MRI appointment.
It is advocating for your child when you are terrified yourself.
It is finding the strength to laugh as a family while carrying burdens that most people never see.
Today, our family is in a very different place than we were at diagnosis. We have access to world-class medical care. We have a deeper understanding of VHL. We have a community. We have hope.
But hope did not arrive overnight.
It was built slowly, one scan, one surgery, one conversation, and one act of courage at a time.
If there is one message I hope people take away from this discussion, it is this:
You are allowed to acknowledge the darkness without living there.
You are allowed to be afraid and still move forward.
You are allowed to grieve the life you imagined while still embracing the life you have.
And most importantly, you do not have to carry it alone.
To anyone navigating a rare disease, whether as a patient, parent, caregiver, or sibling, I see you. I understand more than you know.
Our story is unique, but the emotions are universal.
And sometimes the most powerful thing we can do is tell the truth about them.
Thank you, Angela, for creating a space where that truth could be shared.
Watch the full conversation here: https://www.youtube.com/watch?v=7L4ZLNgUXAI
