LIVING WITH LHON
LIVING WITH LHON
1. Emotions
2. Mobility, Home Modifications, & Driving
3. Assistive Technology, Reading, Films, & TV
4. Social Security & Finances
5. Rehabilitation
6. Education
7. Employment
8. Sports/Activities/Travel
9. Resources
10. Genealogy
11. Lifestyle Choices
12. LHON Plus & Non-Vision Symptoms
1. Emotions
Everything about LHON is emotion-laden, both for the individual affected by sudden vision loss and for their family members and other sighted supporters. All involved can benefit from speaking with a counselor/therapist/psychologist to work through the grief, fear, and anxiety the sudden loss of vision can produce.
Since LHON is rare, it may be helpful to provide your mental health provider with this booklet. It was created by a provider for providers, to give them an understanding of LHON and the emotional challenges you may be encountering.
How to Support the Mental Health of LHON Community Members
It's normal for there to be lots of crying and feelings of depression. It’s important for each person whose life has been impacted by LHON to work through the various stages of grief and not get stuck along the way. This video describes research about the emotional impact of LHON and suggestions about how to adjust. The emotional journey includes moving forward and falling back; it's not a straightforward process.
Other causes of vision loss have very different emotional adjustment processes. When vision loss begins at birth, onsets gradually over decades, or begins late in life when there are no pressures of education or employment, the impact is different from the LHON experience. The individual affected by LHON and their sighted supporters must deal with shock and grief at the same time as they're striving to adjust to rapidly diminishing vision, and often while working to keep up with education or employment.
A major challenge of LHON is coping with loss. Losing the ability to drive, which means losing some of one’s independence. Losing the ability to see and recognize faces, which impacts social connections. Losing the ability to read standard text or watch TV. Coping with loss involves grieving…mourning what’s been lost and learning to live well using different approaches.
An aspect of LHON that can create additional emotional distress is the possibility of and hope for partial vision recovery. The odds of partial recovery vary based upon the specific mutation and the age at onset of vision loss. It can be difficult to fully adapt to living with LHON vision loss while hoping vision will return. Whatever "recovery" occurs tends to happen slowly and is usually only partial, often remaining legally blind. If vision does not improve at all, or not as much as is hoped, then the depression and sadness of the initial vision loss may be experienced all over again. Striking a balance between acceptance of vision loss and hope for partial vision recovery is an ongoing challenge of LHON.
Since an LHON genetic mutation is usually passed maternally, some mothers feel a sense of responsibility for or guilt about their child’s vision loss. Yet we do not control our genetics, so there should be no sense of guilt. It’s helpful to focus on all the good genes that were passed to one's children that will help them cope with this disorder, rather than to focus on the LHON mutation.
Keeping a positive attitude is one of the most important aspects of dealing with LHON. It’s easy to give in to sadness from the vision loss, but it is quite possible to live a full and meaningful life with LHON vision. That doesn’t mean it’s easy. Connecting with others who have lost vision and who are leading rich, productive lives can help with the adjustment to LHON vision.
Attending a LHON Conference is the best way to meet others affected by LHON; click the Conference tab for information about the next LHON Conference and a link to recordings of prior Conferences. Zoom events facilitate connection without requiring travel, and there are about 100 Zoom events each year noted in this calendar. The global LHON Facebook group offers lots of information and support, and smaller, targeted groups are listed on the Community page.
Hadley offers free online courses for people with vision loss and their families. APH offers information for when a child has vision loss.
2. Mobility, Home Modifications, & Driving
When people affected by LHON begin losing vision, they wonder how they’ll get around. Most retain some peripheral vision, which often provides enough sight to walk around without walking into objects, but not enough to see well. Orientation & Mobility (O&M) training is helpful for learning about using a white cane, how to cross streets safely, and accessing public transportation. Many people affected by LHON carry a white cane and use it especially in unfamiliar areas to communicate to those around them that they have vision loss. Some obtain a guide dog, though that can only occur after cane skills have been acquired. Depending on age of onset and location, O&M instruction is provided by a student's school, an adult's state's rehabilitation program, or a local blind services organization. These videos provide an overview of the services provided in O&M instruction, and information about how sighted supporters can provide assistance.
Modifications to the home can make life easier.
How to Create a Home that Accommodates Visual Impairment
Home Modifications for People With Vision Loss
Creating Accessible Kitchens for the Visually Impaired
Transportation is a sudden, significant challenge when LHON vision loss occurs. Initially with one good eye it seems safe to drive but it’s actually dangerous because depth perception is impacted. The second eye may lose vision surprisingly quickly which can lead to dangerous situations. While it's emotionally and practically difficult to give up driving during the acute phase of vision loss, many in the LHON community realize that they continued driving longer than it was safe, and in retrospect acknowledge they should have stopped sooner. It's far better to stop driving a month sooner than necessary, than one day too late. In the U.S. it's illegal to drive in all states when the better eye is worse than 20/40 except New Jersey and Wyoming (20/50) and Georgia (20/60).
Legal Vision Requirements for Drivers in the US
Since driving is not an option for almost everyone who's been affected by LHON for a while, it’s helpful to live in an area where services can be easily accessed without a car. The WalkScore website rates each location.
Options such as Uber and Lyft, as well as local paratransit, can also be helpful.
3. Assistive Technology, Reading, Films, & TV
There is an extensive variety of assistive technology available for people with low vision, and the options continue to increase. With adequate magnification, such as with a CCTV, many of those with LHON vision can read enlarged text using their remaining peripheral vision. Voiceover settings in cell phones, and computer software such as ZoomText, JAWS and Fusion, as well as the built-in accessibility features of other Apple products, are used by many.
The Hadley Technology Workshops series offers free online education.
Hadley Technology Workshops Series
These Facebook groups are a good resource.
iPhone and iPad Apps for the Blind and Visually Impaired Facebook group
For those using Apple products, their Accessibility Support team is at:
877-204-3930.
These videos provide an overview of Assistive Technology options.
Many people seek eyewear to use their remaining vision. These products tend to be very expensive. Each person's vision is different and what works for one person may not work for another. It's important to try out each product to determine what is most effective, and to consider if it will truly be used in daily life given its size and weight.
IrisVision Live may provide sufficient field of vision to see distant objects; the Inspire model likely will not
Patriot ViewPoint Low Vision glasses are similar to IrisVision
eSight Eyewear has a small field of vision that does not work well for most with LHON vision
Aira is a subscription service that connects you to a trained visual interpreter
BeMyEyes is a free service that connects you to a volunteer
Most insurance companies do not cover Assistive Technology equipment, while some Flexible Spending Accounts do cover it. If you’re an adult and you have an open case with your state’s Department of Rehabilitation, they may purchase some of this equipment and provide associated training as part of the “rehabilitation” process, though it takes time to go through that process. If the vision loss occurs under age 18 then the parents’ income is considered when determining need. Some local agencies supporting the blind will loan equipment while awaiting the Department of Rehabilitation. Students in school may be provided access to the technology needed to succeed in school and for college students there might be a student disability center with equipment available for use. Community groups such as the Lions Club may offer grants. The Association of Blind Citizens (ABC) offers an assistive technology fund at:
Assistive Technology Fund
Often, used equipment can be found at prices far lower than the full price. Sometimes family and friends wish to donate money to help purchase needed equipment using programs such as GoFundMe.
Another way to read is to access books in a digital format. Several services exist for free access to electronic books simply by filling out a form signed by a medical professional confirming that the applicant is legally blind.
Much of the material offered by the free sources noted above has been recorded by volunteers so the quality of the readings is varied, or is electronic. Other options may be more expensive but may have professional readers for a higher performance quality.
This article describes some ways to access books, and also has a list of books about blindness.
One way of keeping up with the news is through the newsline service from NFB. This free service provides audio access to over 300 newspapers and magazines.
Watching movies and TV is challenging, as much of the detail cannot be seen with LHON vision. Audio Description provides the information that a vision impaired person cannot gather.
4. Social Security & Finances
Once vision in both eyes is 20/200 or worse, some in the U.S. choose to apply for Social Security benefits. There are two forms of Social Security benefits that may be applicable. SSI benefits depend upon income and assets, while SSDI benefits depend upon work history. Information about how Social Security works for those who are legally blind is at this site.
Social Security for People who are Blind
This document explains differences between standard SSDI and SSDI for those who are legally blind.
Disability Program Differences for Individuals Who are Blind
After receiving Social Security benefits for 24 consecutive months due to a disability, the recipient qualifies for Medicare.
Medicare and Social Security
Setting up an appointment as soon as the individual is legally blind (20/200 or worse in both eyes) protects benefits from the time the appointment is made. By preparing information in advance, the process will go more quickly. Not all who apply will qualify for benefits, though usually legal blindness helps with the qualification process. A private Long Term Disability Insurance policy may be more advantageous than SSDI, if the affected individual has one.
These guides were created to provide general information and resources for the LHON Community in the U.S. from the perspective of finances. The first is generic for those states that do not have a state-specific guide; the others are state-specific.
5. Rehabilitation
If the person with LHON vision loss is an adult, contact your state’s Department of Rehabilitation to learn what they can do to assist in the adjustment to vision loss. There is considerable variation by state and sometimes within different regions of a state.
Vocational Rehabilitation Programs by State
Employment and job retention services through Vocational Rehabilitation Services are available starting at age 16, or slightly younger in some states. There is no upper age limit for both job employment and job retention services. If the individual with a documented disability is motivated to work, can benefit from services, and there is feasibility of successful employment, they are eligible for vocational rehabilitation services.
The primary goal of vocational rehabilitation services is to help people with disabilities remain in or enter the work force. Emphasis is placed on job training, use of adaptive aids, orientation & mobility, workplace modifications, and working with employers to accommodate employees with a disability. Those already employed who develop a visual disability and want to keep working are usually given immediate attention. Rehabilitation Counselors are the coordinators/case managers who assist individuals in developing a plan to learn adaptive skills, provide career counseling and vocational training opportunities, and assist with job placement. To open a case and be assigned a counselor specializing in blind clients requires specific forms, evidence of blindness, and medical records.
The Vocational Rehabilitation counselor may refer the patient to a low vision specialist (and pay for the visit). That specialist will assess low vision needs and make recommendations for items required for success in rehabilitation. There may be a separate appointment with a specialist in high tech aids such as a CCTV, etc. Once all the paperwork is complete, the client and the counselor agree on a “plan” whereby the state may pay for items required to get the blind person to their goal of maintaining or achieving working. This can include all the required assistive technology and, if appropriate, college tuition, books, and supplies.
An adult affected by LHON may learn the skills they need to live successfully with LHON vision in a variety of ways. Local organizations may provide support to individuals with vision loss. Live-in centers provide training in blindness skills. Local options can be found by searching for blind services in your area. Live-in locations include the following and more.
The Carroll Center, Newton, MA
Louisiana Center For the Blind
6. Education
Some of those affected by LHON vision loss are in the educational process. For those in a public elementary, middle or high school, there is usually a vision specialist called a Teacher of the Visually Impaired (TVI) associated with the school or the school district who can support the student in the transition from fully-sighted to vision-impaired. For those in college there is usually a Student Disabilities Center that can help with absence notification to professors at the time of vision loss and provide access to accommodations such as assistive technology, a notetaker, testing accommodations such as extra time and a reader, etc. Most students with a vision impairment other than LHON have had vision loss since childhood and have been trained in living with vision loss before arriving at college, so the Student Disabilities Center may not be structured to provide a simple path for the transition from fully sighted to significantly vision impaired. Those services may be obtained in the community at a local organization providing support to the Blind and Vision Impaired and/or through Vocational Rehabilitation.
There is a Facebook group specifically for those managing education and LHON.
Navigating Education/School With LHON
This document describes the government’s responsibility to educate children with disabilities.
Protecting Students With Disabilities
Here's how one student informed teachers and classmates about LHON.
Here are some tips for students heading off to college.
Off to College: Tips for Students with Visual Impairments
There are many scholarships available to students who are vision impaired.
Christian Record Services Scholarship
7. Employment
Some affected by LHON are already in a career, and need to figure out how to overcome their vision loss to continue with their career. Others wonder what career could they possibly do with LHON vision. This document and Facebook group provide insight from the LHON community about Navigating Employment with LHON.
LHON Navigating Employment
Navigating Employment/Careers with LHON
These videos provide information about Navigating Employment with LHON, including the Job Accommodation Network (JAN) and the National Industries for the Blind.
Obtaining Employment with LHON - Billy Parker, NIB
This overview provides information about the rights of employees with a disability, including legal blindness.
Americans with Disabilities Act - Overview
This site provides ideas and examples about careers and blindness.
8. Sports/Activities/Travel
Many sports and activities can be done successfully with LHON vision.
Here are resources for various sports.
United States Association of Blind Athletes USABA
Running
Beep Ball/Blind Baseball
National Beep Baseball Association - NBBA
Tandem Cycling
Tandem Bicycling: Tips for Cyclists Who Are Blind or Visually Impaired
Bicycling Blind Facebook Group
Skiing/snowboarding
Skiing for People Who are Blind or Visually Impaired
Adaptive Snowboard and Skateboard
Ski for Light - Cross Country Skiing
Golf
Swimming
Blind Hockey
Goalball
Rowing
British Rowing - Adaptive Rowing
Tennis
International Blind Tennis Association (I.B.T.A.)
People affected by LHON also play other sports when their teammates and coaches have been willing to work with them.
VisionAware-Sports and Exercise with Visual Impairment
Encyclopedia of Sports and Recreation for the Blind
Some organization offer grants to obtain equipment, training funds or funds to travel to competitions.
Challenged Athletes Foundation
Other activities include online games.
A travel pass provides free access to U.S. National Parks.
Disneyland offers wireless headsets that provide recorded narratives throughout the park, as do other travel destinations.
9. Resources
Resources for the blind are often targeted to those who either lost vision as children, or at an older age. LHON can onset at any age, so the needs are different for each person affected. Those affected by LHON may feel that they don’t fit in at facilities for the blind since most people there are much younger or much older. People who were once fully sighted and lost vision due to LHON have a different sense of the world than those who have lived without vision since childhood or those who lose sight after completing school, college and career. Resources created by individuals affected by LHON tend to be of particular value to others similarly affected. A list of blogs and podcasts by and about LHON can be found here:
LHON Podcasts, Blogs and More
These resources were reviewed in this video
These organizations are led by individuals with vision loss, and have annual conferences and local chapters.
National Federation of the Blind (NFB)
American Council of the Blind (ACB)
The AFB (American Foundation for the Blind) has a wide range of information and links to other services at their website.
AFB - American Foundation for the Blind
Parents with a child losing vision to LHON may find help from the APH’s Family Connect site and the NFB's National Organization of Parents of Blind Children.
Since LHON is a mitochondrial disorder, it can be helpful to learn more about mitochondrial disease.
UMDF-United Mitochondrial Disease Foundation
LHON is very different from most mitochondrial diseases, which often onset in childhood and affect several systems of the body at once. Some mitochondrial diseases are life-shortening, which is not the case with LHON. Researchers studying mitochondrial disease are studying the same molecular issues as LHON, but the symptoms are very different.
10. Genealogy
LHON can be a good reason to delve into the family’s genealogy. It can be interesting to trace the maternal line through all the women who carried and passed the LHON gene, and the men who carried but didn’t pass it on. This professional genealogist analyzed several LHON families, and explains how to study your own maternal bloodline.
11. Lifestyle Choices
People affected by LHON vision loss often think that since they've already lost so much vision because of LHON, they need not consider the potential impact of environmental factors on their remaining vision. However, continuing to avoid environmental factors that stress the mitochondria gives the remaining optic nerve fibers that provide peripheral vision the best chance of surviving throughout one's lifetime. Living as healthy a life as possible is usually recommended by medical professionals who understand LHON.
12. LHON Plus & Non-Vision Symptoms
Most individuals with an LHON mutation either never experience any symptoms, or lose vision and have no other symptoms. In some cases, an individual carrying an LHON mutation experiences non-vision symptoms that may be associated with the LHON mutation. It is commonly referred to as "LHON Plus", or more recently, LHON Spectrum Disorder.
The LHON Plus Spectrum - Dr. Anne Chiaramello & Dr. Andrea Gropman - 2022
The Clinical Spectrum of LHON Plus - Dr. Anne Chiaramello - 2021
LHON Plus - Dr. Andrea Gropman - 2019
Non-Vision Symptoms and LHON - Dr. Amel Karaa - 2017
Extra-Ocular Clinical Features - Dr. Patrick Yu-Wai-Man - 2014