Leber Hereditary Optic Neuropathy (LHON)

Summary

Type of DNA affected

Mostly mitochondrial DNA (mtDNA)

Common genetic change

m.11778G>A and m.14484T>C

Typical age of onset

Young
adulthood

Body area impacted

Optic nerve
(vision)

Summary

Type of DNA affected

Mostly mitochondrial DNA (mtDNA)

Common genetic change

m.11778G>A and m.14484T>C

Typical age of onset

Young adulthood

Body area impacted

Optic nerve (vision)

Summary

Type of DNA affected
Mostly mitochondrial DNA (mtDNA)

Common genetic change
m.11778G>A and m.14484T>C

Age of onset
Young adulthood

Body area impacted
Optic nerve (vision)

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About LHON

Leber hereditary optic neuropathy, most commonly known as LHON, is a rare genetic condition. LHON is one of at least 350 known types of mitochondrial disease (mito).

Mito affects mitochondria, which are responsible for making energy in your cells. When mitochondria can't produce the energy your body needs, your organs can't function properly. People affected by LHON experience vision loss. In some individuals, LHON also affects other parts of their nervous system. In this case, the syndrome may be referred to as LHON plus.

LHON starts with central vision loss (scotoma) that occurs without warning or discomfort. Vision loss affects males four times more often than females. Affected individuals typically lose central vision between the ages of 15 and 35, but vision loss can occur at any age and affects both men and women.^1,2

LHON typically starts in one eye, with the other eye losing vision within weeks, months, or even a year later. Most often, a person with LHON does not go completely blind. Central vision can be lost to varying degrees, but peripheral or 'side' vision remains.

Can glasses help?

Glasses help the eye focus light properly, usually when someone is short-sighted or long-sighted. They fix problems with how the eye bends light, not how the eye connects to the brain.

But LHON is different. LHON affects the optic nerve, which sends messages from the eyes to the brain. In LHON, the eyes can look healthy, but the messages don’t get through properly. Because of this, glasses usually don’t help improve or stop vision loss.

Is there a treatment?

There is currently no cure for LHON, but treatment focuses on making the most of remaining vision through support, aids, and adaptive technology.

Hi. I'm John.

"After leaving school I had managerial jobs in accounting, taxation, mining and communications but in 1997 my eyesight began to fail. It started as fogginess in the right eye with my left eye fine, but once the damage had been done, the LHON moved left. I had to finish work on medical grounds in May 1998."

Hi. I'm Ashlee.

"LHON, or Leber’s hereditary optic neuropathy, is a type of mito that has affected my family. It’s changed my life and the lives of many people I love. I’m sharing my story so other young people facing vision loss know they’re not alone."

Leber's disease
Leber's optic atrophy
Leber's hereditary optic atrophy
Optic atrophy
Leber's optic neuropathy
Hereditary optic neuroretinopathy

LHON may also be referred to as:

Mitochondrial disease
Primary Mitochondrial Disease (PMD)

Note: Leber hereditary optic neuropathy (LHON) should not be confused with Leber congenital amaurosis (LCA), a different eye condition described by the same doctor.

Immediate support for people with vision loss

Depending on your location, vision rehabilitation organisations throughout Australia for example, Vision Australia and Guide Dogs Australia, can provide valuable support and services. Everyone has their own experiences of being blind or living with a visual impairment. Often, these support services can be tailor-made for you.

These include:

orientation and mobility training
maintaining independence around your community, home, school and workplace
technology assistance

Call our Helpline on 1300 977 180 for more information about services in your area.

Mito Foundations NDIS Navigation Service

The National Disability Insurance Scheme (NDIS) provides funding and support for people who are vision-impaired. Mito Foundation offers an NDIS Navigation Service. This service can help you apply for long-term support.

Learn more about NNS

Call Helpline

NDIS assistance for LHON

In collaboration with the Centre for Eye Research Australia (CERA), we've gathered some important information for people with LHON to access the NDIS.

Other financial support

The following checklist shows some funding options that may help people with LHON outside of the NDIS. Not every option will apply to everyone, but it’s worth considering each one carefully. Take your time to explore what might suit your situation.

Disability Support Pension (DSP): financial support for when your disability makes it hard to work.
Pensioner Education Supplement (PES): extra payment to help with study or training costs if you get the DSP.
Companion Card: allows a support person to attend events or activities with you for free.
Travel Concessions: discounts on public transport for people with disabilities.
Mobility Allowance: financial support to help with travel costs if you can’t use public transport.
Parking Permit: allows parking in designated disabled spots for easier access.
Assistive Technology Program: funding to buy equipment or devices that make daily life easier.
Private Health Insurance: some policies may help pay for vision aids or therapy.

Learn more about government payments, support services, and state concessions in our Government Support resource.

Beyond the basics

Learn more and find support to help you navigate your journey with mito.

Milestones Prevalence Symptoms Causes Diagnosis Care team Health care Clinical studies More to read Support groups

Milestones

Milestones

LHON was first described in 1858 by Dr. Albrecht von Graefe. In 1871, Dr. Theodore Leber who worked in the same department in described 15 people from four families with optic atrophy using the recently developed ophthalmoscope.

In 1988, researchers discovered a genetic change in a mitochondrial DNA (mtDNA) gene that causes LHON. LHON was the first mitochondrial genetic condition discovered.³

Prevalence

Prevalence

Although rare, LHON is one of the most common types of mito. It affects around 1 in 45,000 people worldwide⁴, and in 2020 is was reported to affect 1 in 68,403 people in Australia.⁵

Large population studies from the United Kingdom and Australia show that at least 1 in 1000 people carry the m.14484T>C or the m.11778 G>A LHON genetic change.⁶ Not all people who carry one of these changes will develop symptoms of LHON. LHON is more common in males, who are more likely to lose vision.⁷

Symptoms

Signs and symptoms

Central vision loss is typically the only symptom, but this can vary from person to person.

The main signs are:

Sudden blurred or clouding of central vision

Blurriness is often the first symptom. It starts with a small blurry spot called a scotoma in or around the centre of vision. This spot undergoes sudden expansion, followed by stabilisation. Vision loss is sudden and painless, typically in one eye first, and may affect both eyes within months.

Severe loss of the sharpness of vision (visual acuity)

Visual acuity refers to the clarity of vision, specifically, your ability to recognise small details with precision. It's often measured at a distance of 6 meters and is expressed as a ratio, for example, 6/6 vision. This means a person sees at 6 meters what they should see at 6 meters.

Vision in people with LHON can be different from person to person. But usually, it is around 6/60 or worse. This means that a person sees at 6 metres what should be visible at 60 metres. Some people with LHON can only see hand movements or light. This level of vision is considerably less than 6/6 vision. People with LHON-related vision loss are often considered legally blind.

In Australia, a person is legally blind if they can’t see at 6 metres what someone with normal vision can see at 60 metres, even with glasses. A person can also be legally blind if they have a very narrow field of vision, less than 20 degrees wide. This means they might have trouble seeing things to the side, even if they can see straight ahead. Being legally blind does not always mean total blindness.

Optic nerve damage (optic atrophy)

A person can have a normal eye examination initially and in the early stages.

Optic atrophy happens when the optic nerve, which carries signals from the eye to the brain, degenerates over time. Although vision loss is often permanent, some people may recover some vision over time. Vision recovery is more common in those with the m.14484T>C genetic change, particularly those affected at a young age.

"Living with LHON has taught me how to adapt and use my remaining vision in powerful ways. Over time, I’ve developed skills that help me navigate the world with confidence. It might seem like my vision has improved, but really, it's my ability to adjust and make the most of what I have. I’m proud of how far I’ve come."

— Adult living with LHON, 2025

This section combines information from trusted sources.^2,8 The explanations have been adapted into plain language by Mito Foundation to support understanding within the mito community.

For more information

Understand the signs and symptoms of mito

Causes

Causes

LHON is a genetic condition, most commonly caused by DNA changes in the mitochondria (mtDNA) and is inherited from the mother (maternally inherited).

This means:

Males with the LHON genetic change cannot pass it on to their children.
Females with the LHON genetic change will pass it on to all of their children regardless of whether they are sons or daughters. However, not everyone with the genetic change will develop vision loss.

The most common genetic change that causes LHON is found in the MT-ND4 gene. This gene makes a protein that is part of complex 1 in mitochondria, which are the cell's energy producers. The most common change is when a "guanine" (G) changes to adenine" (A) at a specific point in the mtDNA. The genetic change is called m.11778G>A.^5,9

Explanation of the common genetic change for LHON. The most common genetic change that causes LHON is found in the mtDNA genome (m), affecting a specific point in the MT-ND4 gene (11778), with the sequence of letters changed from A to G (G>A).

Explore more about the genetics behind MT-ND4.

These three changes (ND4 mt.11778G>A, ND1 mt.3460G>A, and ND6 mt.14484T>C) cause over 90% of LHON.

There is no known family history in 50% of people with LHON.⁵ However, LHON might skip one or several generations. This could be due to difficulties tracing family medical history.

Sometimes, a genetic change can occur randomly during conception. This is called a de novo genetic change, meaning it is new. Some people don’t have a family history of mito. However, de novo changes causing LHON are very rare.²

Other genes that may cause LHON:

MT-ND6
MT-ND4
MT-ND1
MT-CYB
MT-CO3
MT-ND5
MT-ND2
MT-CO1
MT-ATP6
MT-ND4L
NDUFS2
DNAJC30

Gene list adapted from Newman et al. (2021).¹⁰

Genetic carriers

Different family members can be affected differently. One family member may experience vision loss early, while another seems fine. If a mother has no signs and symptoms of LHON but carries the genetic change, she is known as a genetic carrier. All her children inherit the LHON genetic change, but this does not mean they will lose vision. In fact, we know that among LHON carriers, 1 in 20 females and 1 in 6 males lose vision. However, Australian LHON research shows there are some families with a higher or lower risk of vision loss. The vast majority of LHON carriers will never lose vision. Predicting who will develop symptoms and how severe the symptoms will be, can be difficult.

Sex differences in LHON

LHON is a unique type of mito. Both children and adults, including men and women, can be affected by LHON. However, men are at a higher risk of vision loss for reasons still not fully understood.

Men are more likely to experience vision loss, with the highest risk around 26 years old. Women can also be affected, but their risk of vision loss is constant across their life span. This often leads to women being undiagnosed or misdiagnosed. Scientists are still investigating why these sex differences exist, hoping to uncover the underlying reasons.^5,7

Risk factors

Some research suggests that some factors may contribute to the onset of vision loss. Potential risk factors include:

Smoking tobacco
alcohol consumption
certain prescription medications
illicit drug use
environmental toxins

If you’re at risk of LHON vision loss, check with your health professional before taking medications to consider the benefits and risks. A list of potentially problematic medications is provided on the important information about medicines page.

For more information

Learn more about genetics and mito

Information to understand your diagnosis

Information to understand your child’s diagnosis

Diagnosis

Diagnosis

A diagnosis for LHON is based on your history, signs and symptoms, physical examination, and other testing.

Physical exam

During a physical exam, your vision and eye health will be assessed. Eye tests and other types of tests may include:

Visual acuity, which involves reading letters on a chart.
Visual field, which involves checking your peripheral (side) vision.
An autorefractor may be used to measure the focus of your eye.
colour vision test to check for any colour blindness.
OphthalmoscopyColour or fundoscopy requires eye drops to make your pupils open. This allows your health professional to examine your lens, retina, optic nerve, and nearby blood vessels.
Optical coherence tomography (OCT) is a non-invasive imaging method. It creates detailed pictures of the back of your eye (the retina). It helps measure the thickness of your retina and optic nerve, as changes may indicate signs of LHON.
Magnetic Resonance Imaging (MRI) is a non-invasive imaging method that takes pictures to help explain why vision is reduced. Although the eyes may appear normal on MRI, specific features can show signs of LHON in the optic nerves.

Genetic testing

If your doctor suspects LHON, they will arrange genetic testing of a blood or saliva sample to look for any changes associated with the condition. The genetic change for LHON is found in mtDNA. Genetic testing is highly specialised, and it may take up to three to four months to receive the results. Genetic counselling is important to discuss what these results mean for you and your family.

For more information

Learn more about genetics and mito

Care team

Monitoring

If you have LHON, you'll likely need a team of health professionals to manage your care. Here are some health professionals you might work with:

General Practitioner (GP): your main point of contact. GPs can help with referrals and tests and coordinate your care.
Neurologist: specialises in nervous system disorders and monitors progression.
Ophthalmologist: specialises in vision health and can monitor changes in your vision.
Neuro-ophthalmologist: specialises in vision health related to the nervous system.
Low vision specialist or orthoptist: assesses your vision and recommends visual aids.
Genetic Counsellor: provides education and support for people with genetic health conditions.
Occupational Therapist: assists with daily living activities and maintains quality of life.
Mental health professional: offers mental health and wellbeing support.

For more information

Information to build your care team

Information to build your child’s care team

Health care

Recommended care

The following recommendations have been adapted from the Australian Patient Care Standards for mito and the Australian article Family and genetic counselling in LHON:^2,11

Eye care (Ophthalmology)

If you or a family member have LHON, visit an eye care provider and share your and your family’s medical history. If your symptoms are related to your diagnosis, they can refer you to an ophthalmologist for a comprehensive exam if needed.

The assessment includes:

checking your visual acuity
assessing your visual fields
performing a slit lamp examination and fundoscopy, regardless of symptoms.

Referrals:

for people with LHON, referral to a low-vision specialist is recommended
low-vision specialists can provide tailored support and assistive devices
find a health professional with experience in seeing people with LHON.

Ongoing Monitoring:

Discuss ongoing monitoring with your ophthalmologist. They may recommend annual visits or request an appointment when needed. These visits should involve:

checking for changes in your vision
assessing the health of your retina and macula
measuring intraocular pressure
evaluating the health of your optic nerve

"Keeping up with regular eye checks is really important. They can catch other eye problems early, ones that can be treated, and help protect the vision I still have. It’s one of the ways I take charge of my health."

— Adult living with LHON, 2025

Treatment for LHON

There is currently no cure for LHON, but treatment focuses on making the most of remaining vision through support, aids, and adaptive technology.

Research into new treatments is ongoing, but none have been proven to be safe or effective. While some options show promise, more research is needed to confirm their benefits. New or experimental treatments must be considered cautiously; talk to your health professionals before trying them.

Low-vision rehabilitation can be a practical and cost-effective way to adapt to vision loss. It can help improve quality of life, maintain independence, and support daily activities.

Antioxidants and Idebenone

What is Idebenone?

The theory is idebenone is a synthetic drug similar to CoQ10, which may help our cells make energy. Idebenone can cross into the brain and protect cells from damage by acting as an antioxidant. This may suggest it could help eliminate harmful substances called free radicals that can damage cells.

Does idebenone work?

The effectiveness of idebenone has not been robustly proven, and more research is needed. However, idebenone has shown benefits in clinical trials for LHON. However, the response to treatment can vary based on genetic factors and the stage of the disease.

How is idebenone used, and what types are available?

Idebenone is thought to have limited side effects. It is also available as a dietary supplement. There is a special, high-purity, expensive version called Raxone™, which has been used in clinical trials for LHON.

How much does idebenone cost?

Many people with mito choose not to take supplements as they cost too much. If you are on a limited income, have multiple family members taking supplements, or are unable to work, this cost may be outside of your budget.

Some community members have reported that Raxone™ can be purchased online as a supplement at a cost of about $5,000 AUD per month.

In some instances, Raxone™ may be provided through a special access scheme through a medical professional.

Is idebenone safe?

Raxone™ is considered safe and well-tolerated, with most people able to stick to the recommended dosing schedule. The main side effects are related to the digestive system. In the LEROS study, 181 people were included in the main analysis. About 6 out of 10 people experienced some side effects, and about 2 out of 10 people stopped treatment because of these effects. However, no serious or severe side effects were reported by more than 10 people.

Can I access idebenone in Australia?

The evidence for using Raxone™ to treat vision loss in people with LHON has been reviewed. Idebenone has not fully been proven to work for LHON. Currently, there is insufficient evidence to support making this available in Australia, England, and other parts of the world.

Raxone™ does not have approval from the Therapeutic Goods Administration (TGA) and is not recognised as a treatment for any type of mito. However, Raxone™ can be bought online, where it is sold as a dietary supplement.

This section combines information from trusted sources.^12-13,15 The explanations have been adapted into plain language by Mito Foundation to support understanding within the mito community.

Gene therapy

What is gene therapy?

Gene therapy is an advanced treatment that involves inserting healthy genes into a person's cells to replace faulty or missing genes. This approach aims to correct genetic conditions at their source. For LHON, gene therapy uses a virus called an adeno-associated virus (AVV) to deliver a healthy version of the gene that has changed in people with LHON.

How does gene therapy work?

In LHON, the gene therapy is injected directly into the eye. The AAV carries the healthy gene into the cells, allowing them to produce the correct protein needed to function properly. Clinical trials are underway to determine if gene therapy can help restore vision or prevent further vision loss by fixing the underlying genetic condition.

How long has gene therapy been used?

Gene therapy for LHON is relatively new. LHON is the first type of mito for which gene therapy has been tested in clinical trials. There are currently several gene therapies in development for LHON globally.

Does gene therapy work?

Gene therapy for LHON has shown promising safety data in clinical trials. Most people tolerate the treatment well, with few serious side effects reported. Researchers continue to monitor the long-term safety and effectiveness of these therapies. Vision improvements have been variable, and more research is required.¹⁷

How much does gene therapy cost?

There is currently no gene therapy approved for LHON. Therefore, no price is available.

The only approved gene therapy for an inherited eye disease is “Luxturna” for RPE65 Leber Congenital Amaurosis (LCA), priced at approximately $850,000 USD per eye.¹⁸

Can I access gene therapy in Australia?

Currently, gene therapy for LHON is still in the clinical trial phase and is not widely available. People interested in participating in clinical trials or accessing these treatments should consult with their health professionals for the most up-to-date information and potential options.

The section has been adapted from a trusted source.¹⁰ The explanations have been adapted into plain language by Mito Foundation to support understanding within the mito community.

Lifestyle recommendations

Limit alcohol and avoid smoking, as both can increase the risk of vision loss. Maintaining a healthy lifestyle can also be beneficial — this includes eating a balanced diet, staying active, and using eye and head protection during sports and recreational activities whenever possible. High-risk activities like boxing should be avoided.

For more information

Access the Patient Care Standards for Mito

Clinical studies

Mito Foundation provides information to help people affected by mito understand clinical trials and how to find opportunities that may be relevant to them.

Clinical trials help researchers test new ways to prevent, diagnose, treat and manage mito. Some trials test whether a treatment is safe and whether it may help people.
Other clinical studies may look at symptoms, diagnosis, genetics, quality of life, or how mito affects people over time.
Clinical trials are carefully planned. The therapies being studied may be at different stages. Trials may not be available for every type of mito, and not every trial will be right for you. Some trials are only open to people with a confirmed genetic diagnosis, specific symptoms, a certain age range, or the ability to attend study appointments.

Mito Foundation’s emerging therapies information explains therapies in development, how clinical trials work, and what you may wish to consider before taking part. You can also use the Therapy Finder to explore therapies in development and see what may be relevant to you.

Learn more about taking part in clinical trials
Use the Therapy Finder

Staying informed

One way to hear about opportunities to take part in clinical trials is to join the Mito Registry.

The Mito Registry helps connect people with research opportunities that may be relevant to them. It also helps Mito Foundation understand how many people in Australia are affected by different types of mito.

This information can help support future research, services and advocacy.

Join the Mito Registry

More to read

External information

Information about LHON

Low-vision Community Support Services Australia

Support groups

Support groups

Australian-based Facebook groups for LHON

Global Facebook groups for LHON

Support for family members and carers

Mito Foundation support services

Helpline

Call Helpine for general advice, assistance in seeking a referral or more information on Mito Foundation support services.

Contact Helpline

Events

Mito Foundation events bring together people impacted by mitochondrial disease (mito).

Learn more about events

NDIS support

Access the NDIS Navigation Service (NNS) for resources, education and 1:1 guidance on the NDIS.

Learn more about NNS

References

Stramkauskaitė A, Povilaitytė I, Glebauskienė B, Liutkevičienė R. Clinical Overview of Leber Hereditary Optic Neuropathy. Acta Medica Lit. 2022;29(1):9.
Sue CM, Balasubramaniam S, Bratkovic D, Bonifant C, Christodoulou J, Coman D, Crawley K, Edema‐Hildebrand F, Ellaway C, Ghaoui R, Kava M. Patient care standards for primary mitochondrial disease in Australia: an Australian adaptation of the Mitochondrial Medicine Society recommendations. Internal Medicine Journal. 2022 Jan;52(1):110-20.
Johns DR, Heher KL, Miller NR, Smith KH. Leber's hereditary optic neuropathy: clinical manifestations of the 14484 mutation. ArchOphthalmol. 1993 Apr 1;111(4):495-8.
Carelli V, Carbonelli M, De Coo IF, Kawasaki A, Klopstock T, Lagrèze WA, La Morgia C, Newman NJ, Orssaud C, Pott JW, Sadun AA. International consensus statement on the clinical and therapeutic management of Leber hereditary optic neuropathy. J Neuroophthalmol. 2017 Dec 1;37(4):371-81.
Shemesh A, Sood G, Blair K, et al. Leber Hereditary Optic Neuropathy (LHON) [Updated 2024 Mar 1]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan. Available from: https://www.ncbi.nlm.nih.gov/books/NBK482499/
Man PY, Turnbull DM, Chinnery PF. Leber hereditary optic neuropathy. J Med Genet. 2002 Mar 1;39(3):162-9.
Mackey DA, Buttery RG. Leber hereditary optic neuropathy in Australia. Aust N Zj Ophthalmol. 1992 Aug;20(3):177-84.
Poincenot L, Pearson AL, Karanjia R. Demographics of a large international population of patients affected by Leber's hereditary optic neuropathy. Ophthalmology. 2020 May 1;127(5):679-88.
Sanchez MI, Kearns LS, Staffieri SE, Clarke L, McGuinness MB, Meteoukki W, Samuel S, Ruddle JB, Chen C, Fraser CL, Harrison J. Establishing risk of vision loss in Leber hereditary optic neuropathy. Am J Hum Genet. 2021 Nov 4;108(11):2159-70.
Newman NJ, Yu-Wai-Man P, Carelli V, Moster ML, Biousse V, Vignal-Clermont C, et al. Efficacy and Safety of Intravitreal Gene Therapy for Leber Hereditary Optic Neuropathy Treated within 6 Months of Disease Onset. Ophthalmology. 2021 May;128(5):649–60.
Mackey DA, Staffieri SE, Lopez Sanchez MI, Kearns LS. Family and genetic counseling in Leber hereditary optic neuropathy. Ophthalmic Genet. 2025 Jan 22:1-9.
Catarino CB, von Livonius B, Priglinger C, Banik R, Matloob S, Tamhankar MA, et al. Real-World Clinical Experience With Idebenone in the Treatment of Leber Hereditary Optic Neuropathy. J Neurophthalmol. 2020 Dec;40(4):558.
Klopstock T, Yu-Wai-Man P, Dimitriadis K, Rouleau J, Heck S, Bailie M, et al. A randomised placebo-controlled trial of idebenone in Leber’s hereditary optic neuropathy. Brain. 2011 Sep;134(9):2677–86.
MA E, Sadun A. Orphanet: Leber hereditary optic neuropathy [Internet]. www.orpha.net. 2021 [cited 2024 Jul 11]. Available from: https://www.orpha.net/en/disease/detail/104
Yu-Wai-Man P, Carelli V, Newman NJ, Silva MJ, Linden A, Van Stavern G, Szaflik JP, Banik R, Lubiński W, Pemp B, Liao YJ. Therapeutic benefit of idebenone in patients with Leber hereditary optic neuropathy: The LEROS nonrandomised controlled trial. Cell Rep Med. 2024 Mar 19;5(3).
Online Mendelian Inheritance in Man (OMIM). #535000 - Leber Optic Atrophy [Internet]. omim.org. 2024 [cited 2024 Jul 10]. Available from: https://omim.org/entry/535000#title
Yu-Wai-Man P, Newman NJ, Biousse V, Carelli V, Moster ML, Vignal-Clermont C, Klopstock T, Sadun AA, Sergott RC, Hage R, Degli Esposti S. Five-year outcomes of lenadogene nolparvovec gene therapy in Leber hereditary optic neuropathy. JAMA Ophthalmol. 2024 Dec 19.
Drugs.com. Luxturna cost. Available from: https://www.drugs.com/medical-answers/luxturna-cost-3387128/ [Accessed 17 February 2025].

Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information’s accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.

Acknowledgement: Mito Foundation acknowledges the valuable contributions of our reviewers, we thank Professor David Mackey AO (Ophthalmologist, Professor of Ophthalmology, NHMRC Practitioner Fellow, a councilor of the Royal Australian and New Zealand College of Ophthalmologists (RANZCO) and current RANZCO representative on the Council of the Asia Pacific Academy of Ophthalmology), Dr Sandra Staffieri AO (Research Fellow, Clinical Orthoptist), Lisa Kearns (Research Orthoptist and Associate Genetic Counsellor), Dr Isabel Lopez Sanchez (Principal Investigator), and Lori Bonertz (Pharmacist) for their review. As well as Diane, James, Pam, and Rob, members of the mito community.

Author: Mito Foundation
Version: 1
Date published: Monday 16 June 2025

What is LHON? Causes, symptoms and support

Summary

Type of DNA affected

Common genetic change

Typical age of onset

Body area impacted

Summary

Type of DNA affected

Common genetic change

Typical age of onset

Body area impacted

Summary

Prefer to listen?

About LHON

Can glasses help?

Is there a treatment?

Hi. I'm John.

Hi. I'm Ashlee.

Other names for LHON

Immediate support for people with vision loss

Mito Foundations NDIS Navigation Service

NDIS assistance for LHON

Other financial support

Beyond the basics

Milestones

Mito Foundation support services

Helpline

Events

NDIS support

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