FOR US RESIDENTS ONLY FOR HEALTHCARE PROVIDERS
Request More INfo FOR HEALTHCARE PROVIDERS
Request More INfo

Living with LHON

hero glass
hero glass mobile
  • Living with LHON
  • Remaining independent
  • Genetic burden and how to manage

Living with LHON

For patients and their families, LHON can come as a shock. However, most of the affected people adjust to their new level of visual functioning within a few years after the first symptoms of LHON appear.1

Once diagnosed, people with LHON are referred to specialists and low–vision clinics to help them understand their condition and come to terms with their diagnosis.2

Sebastian
Sebastian, Living with LHON
crack
Background illustration Background illustration
icon shard 4
People with LHON don’t appear blind; therefore, those around them might not react appropriately.

Remaining independent

Most people with LHON retain their peripheral vision, which gives them enough sight to walk around. Some people with LHON carry a white cane to make people around them aware of their visual impairment.

Moving around

Since most people with LHON can no longer drive, transportation becomes a sudden issue. Get in touch with your local blind services organization, state rehabilitation program, or schools for the visually impaired. They can offer orientation and mobility training, including how to cross the street safely and access public transportation.
icon shard 1

Using computers and assistive devices

There’s a wide range of assistive technology for people with low vision. Most modern phones have built-in accessibility features for people with visual impairment. By making simple changes like voiceover settings on your mobile phone or assistive technology, you can continue using your phone and computer independently.
icon shard 2

Genetic burden and how to manage

Once you are diagnosed with LHON, it is possible that your siblings (with whom you share a mother) may also have this condition. And if you have a sister, it is also possible that she may pass the condition on to her children. Since a mother passes on LHON to all her children, it’s clear who carries it without the need for additional blood tests, although people often choose to have their testing done.3

It’s crucial to alert extended family members who could have inherited the LHON gene.3 Share your diagnosis and encourage them to speak to their physician as they may be at risk of developing LHON.3

Resources are available right-arrow

References

  1. Kirkman MA, et al. Invest Ophthalmol Vis Sci. 2009;50(7):3112-3115.
  2. Garcia GA, et al. Clin Ophthalmol. 2017;11:417-427.
  3. Yu-Wai-Man P, et al. Leber Hereditary Optic Neuropathy. 2000. In: Adam MP, Bick S, Mirzaa GM, et al., eds. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2025. Updated March 2021.