Built by someone living with LHON for 20+ years

The resource that didn't exist
when I needed it most.

An authoritative guide to Leber's Hereditary Optic Neuropathy — real answers, verified supplements, and the research decoded by someone living it.

Ask the LHON AI
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Start Here

Just diagnosed? Here's what to do first.

1

Understand your diagnosis

LHON is a mitochondrial genetic condition — not a death sentence for your quality of life. Understanding the biology is the first step to making informed decisions.

Read LHON 101 →
2

Know your mutation

The three primary mutations (11778, 3460, 14484) each carry different prognosis profiles and spontaneous recovery rates. Knowing yours changes what you should prioritize.

Learn about mutations →
3

Find an LHON specialist

Most ophthalmologists are not equipped to manage LHON. You need a neuro-ophthalmologist who has seen LHON patients. This is the most important call you'll make.

How to find one →
LHON 101

What you actually need to know

Not a textbook definition. A real explanation of what's happening in your body — written by someone who has lived it and studied it for decades.

🧬

What is LHON?

A mitochondrial genetic disease that causes sudden, severe, painless loss of central vision due to optic nerve degeneration.

Read more →
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The Three Primary Mutations

11778, 3460, and 14484 are not the same. Each has a different prognosis, recovery rate, and response to treatment.

Compare mutations →
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Spontaneous Recovery

It happens. The 14484 mutation has the highest rate. Understand the realistic odds and what can influence your window.

Recovery explained →

Why Males Are Affected More

LHON is maternally inherited but disproportionately affects males. The biology behind this — and what it means for carriers.

Genetics explained →
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LHON Plus

Peripheral neuropathy, tremors, cardiac issues, migraine. The non-vision symptoms that aren't always discussed at diagnosis.

LHON Plus →
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What to Absolutely Avoid

Smoking is one of the strongest environmental triggers for LHON. For carriers, it significantly raises the risk of conversion. Certain medications are also known triggers. The full list.

Risk factors →
Research Hub

Where the science actually stands

Not press releases. A real-time breakdown of what the clinical research says — decoded for patients.

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Idebenone (Raxone®)

The only disease-specific treatment — approved in EU/UK, rejected in US. What the LEROS trial showed, the correct clinical dose, and the quality sourcing problem.

Idebenone deep dive →
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Gene Therapy — Where It Stands

Intravitreal gene therapy for the 11778 mutation has produced real results in trials. Not yet accessible in the US — but the science is advancing.

Gene therapy update →
From the Blog

Decoded for the LHON community

Clinical research translated into plain language — by someone who has a personal stake in getting it right.

Treatment June 2026

FDA Rejects Idebenone for LHON: What It Means and What to Do Right Now

The FDA issued a Complete Response Letter to Chiesi in March 2026. Here's the plain-language breakdown of what happened and the practical steps for patients.

Read more → 8 min
Supplements Coming Soon

The Mitochondrial Stack: What I Actually Take and Why

Beyond idebenone — the full supplement protocol built around 20 years of research and lived experience with LHON.

Research Coming Soon

LHON Gene Therapy: Where the Science Stands in 2026

A patient-facing breakdown of the gene therapy landscape — what the trials showed, who qualifies, and how to ask your doctor.

Community

You're not navigating this alone.

The LHON community is global, resilient, and actively pushing for better research and treatment access.

6,000+
Members across LHON Facebook groups
3
Primary mutations
20+
Years of lived experience behind this site
P
Talk to Paul — Free
A call with someone who has been living with LHON for 20+ years.
For newly diagnosed patients and families. No agenda, no sales pitch — 20–30 minutes with someone who's been there.
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