The patient journey | Leber hereditary optic neuropathy (LHON)

FIECON Patient Perspectives

In this podcast, Lily Mumford talks to Lauren Weinberg, Senior Associate at FIECON, about her patient journey, experience living with LHON, and how losing her vision has impacted her life.

Leber hereditary optic neuropathy (LHON) is a rare condition that primarily affects young adults. It causes painless vision loss, typically starting in one eye and later affecting the other eye within a few weeks. Some individuals with LHON may also experience rare neurological problems like nerve issues, tremors, muscle weakness, and movement disorders.

LHON is caused by changes in mitochondrial DNA and is inherited through the maternal line. It is a rare disease affecting about 1 in 50,000 people. Many carriers of LHON do not experience significant vision loss.

However, males are four to five times more likely to lose vision than females. The annual incidence of vision loss in LHON is extremely low, around 1 in 10 million.