About LOA/LHON

Leber Optic Atrophy (LOA) and Leber Hereditary Optic Neuropathy (LHON) are rare inherited eye conditions affecting the optic nerve. This often leads to sudden and severe vision loss, usually starting in one eye and quickly following in the other. Central vision becomes cloudy or disappears, making reading and recognizing faces difficult.

Certain medications and substances can be harmful to carriers of the LHON mutation as they may further disrupt mitochondrial function. It is important to be cautious with certain antibiotics, smoking, and excessive alcohol consumption. Idebenone (Raxone) is currently the only approved medication for treating LHON in certain stages.

LHON is inherited mitochondrially, meaning it is passed down exclusively through the mother. Fathers do not transmit the condition to their children. Not everyone who carries the mutation develops symptoms; this phenomenon is called incomplete penetrance. Men have a higher chance than women of developing symptoms.

In the Netherlands, there are specialized centers for the diagnosis and guidance of LOA/LHON, including the university medical centers in Nijmegen, Rotterdam, and Amsterdam. Bartiméus and Visio offer specialized rehabilitation and support for people with visual impairments.