Living with LHON

Vision loss can be an overwhelming event in one’s life.Footnote1,Footnote2,Footnote3 It is a problem that can make life challenging. 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.Footnote2

Once diagnosed, people with LHON are referred to specialists and low vision clinics to help you understand your condition and come to terms with your diagnosis.Footnote1

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.

  • Since most people with LHON can no longer drive, transportation becomes a sudden issue. It would be helpful to live in an area where you can easily access services without a car. Get in touch with your local blind services organisation, 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.

    If you can’t move away from your home, you can consider assisted living to help you carry out daily tasks. You will find local voluntary and patient support groups that can offer further guidance on getting used to living with visual impairment.

  • 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 such as ZoomText, Kurzweil, and JAWS, you can continue using your phone and computer independently.

Checklist for LHON family members

LHON has a significant impact on the family members of people diagnosed with LHON.
It requires them to offer mental, physical and emotional support.

Genetic burden and how to manage

Once you are diagnosed with LHON, you suddenly know that your siblings, your maternal siblings, and their future children could have the condition.Footnote1 Since a mother passes on LHON to all her children, it’s clear who carries it without the need for additional blood tests.Footnote1 Although people often choose to have their testing done.

It’s crucial to alert extended family members who could have inherited the LHON gene.Footnote1 Share your diagnosis with them and warn them of the environmental factors that increase the risk of vision loss.Footnote1 For example, smoking, binge drinking and taking certain antibiotics.Footnote1

    1. Yu-Wai-Man P and Chinnery PF. Leber Hereditary Optic Neuropathy. 2000. 

    2. Kirkman MA, et al. IOVS. 2009;50: 3112–15. 

    3. Garcia GA, et al. Clin Ophthalmol. 2017:11;417–27. 

Disclaimer: The information on this website is intended only to provide knowledge of Leber’s hereditary optic neuropathy (LHON). This information should not be used in place of advice from your GP or other healthcare professional. If in doubt, please contact your doctor for advice. This website has been produced by Chiesi Pharmaceuticals. The website has been developed in accordance with industry and legal standards to provide information for healthcare professionals and the general public about LHON. Chiesi Pharmaceuticals makes every reasonable effort to include accurate and current information. However, the information provided in this website is not exhaustive.

Patient & Caregiver: In case you need to report an adverse drug reaction, please refer to your physician, asking him to fill in and submit the relevant case report to the concerned Health Authority, according to the Pharmacovigilance requirements in force in your Country. Nevertheless, please be kindly reminded that each patient can report any such cases directly to the national reporting system.

Healthcare Professional: In case you want to report an adverse drug reaction you become aware of, please report it to your Health Authority according to the requirements set by the pharmacovigilance legislation.