Twenty years ago I sat where you might be sitting right now — newly diagnosed, scared, and surrounded by specialists who could tell me what was wrong but not what it actually meant to live with it. This call is the conversation I wish I had gotten.
I've been through the diagnosis, the specialist circuit, the supplement research, and the years of figuring out how to build a full life with this disease. Everything on this site comes from that experience. This call is an extension of it — one person who has been living with LHON talking to another.
The hardest part of a LHON diagnosis isn't the medical information — it's the isolation. The feeling that no one around you has any idea what this means or what you're facing. That's what I want to change for the people who find this site.— Paul, Founder
Slots are limited, so I want to make sure the people who book are the people this call is most useful for.
You got the diagnosis recently — weeks or months ago. You're still trying to understand what it means and what to actually do.
Your son or daughter just received a LHON diagnosis. You need to talk to someone who understands this from the inside.
You've tested positive for an LHON mutation but haven't converted. You want to understand what that means and what you can do now.
Someone in your family has LHON and you've just learned you carry the same mutation. You're trying to figure out what comes next.
This isn't a coaching session and it isn't a medical consultation. It's a conversation.
I run a few different things alongside LHON Hub — I have a family, and the time I can give to these calls is real but limited. I open a small number of slots each month. When they're gone, they're gone until the next month.
Why I keep the slots limited: Not to create artificial scarcity — but because a 20-minute call where I'm present and focused is worth more than ten calls where I'm distracted. If there's a wait, it means the call you get will actually be worth your time.
Free · 20–30 minutes · Video or phone · Limited slots each month