Why this site exists
When you get a LHON diagnosis, you enter a strange information vacuum. The disease is rare enough that most doctors don't know much about it. The existing online resources are either overly clinical (written for physicians, not patients) or emotionally supportive but medically shallow. Neither gives you what you actually need in the first 90 days — which is when the decisions that matter most get made.
I built LHON Hub to fill that gap. Not as an outside observer, but as someone 20+ years into this disease who has done the research, tried the supplements, navigated the specialist landscape, and watched the treatment pipeline evolve from nothing to the first drugs being studied for FDA approval.
What makes this different
Most health sites are written by people who study a condition. This one is written by someone who lives it. That difference matters — especially for a disease where the details change everything. Which mutation you carry. How long ago your vision changed. Whether you've been exposed to the known triggers. These aren't academic questions — they determine what you should be doing right now.
My background in holistic health gives me a different lens than a specialist who only sees LHON through the prescription drug pipeline. I believe in the mitochondrial foundation — building up every system that supports the cells your disease is attacking. Idebenone may or may not become accessible in the US. The mitochondrial support stack is available to you today.
The goal of this site is simple: If you were just diagnosed with LHON and found this page, I want you to leave knowing more than I knew after my first year — and feeling more equipped to take action. If I can compress two decades of hard-earned knowledge into something you can access on day one, this site will have done its job.
A note on medical advice
Nothing on this site is a substitute for a qualified medical professional — ideally a neuro-ophthalmologist who has seen LHON patients before. I can decode the research, share what has worked for me, and point you toward the right questions to ask. The decisions are yours to make with your physician.
What I can tell you is that the most important thing you can do right now — regardless of your mutation, your timeline, or your current vision status — is find the right specialist. Everything else builds from there.
Want to talk? I offer a free 20–30 minute call for newly diagnosed patients and families. No agenda, no sales pitch — just a conversation with someone who has been living with this disease for over 20 years. Book a call →