LIVING WITH LHON
LIVING WITH LHON
1. Emotions
2. Mobility, Home Modifications & Driving
3. Assistive Technology, Reading & Films
4. Social Security
5. Rehabilitation
6. Education
7. Employment
8. Activities/Sports/Travel
9. Resources
10. Genealogy
11. Lifestyle Choices
12. LHON Plus & Mitochondria
1. Emotions
Everything about LHON is emotion-laden, both for the individual affected by sudden vision loss and for their family members and other loved ones. Speaking with a counselor can be helpful in talking through the grief, fear and anxiety the sudden loss of vision can produce. The individual affected and their loved ones can all benefit from finding a counselor, therapist or psychologist with experience supporting people dealing with vision loss, who can often be found at non-profit organizations devoted to supporting people affected by blindness, or with any counseling professional with experience supporting individuals processing grief.
Adjusting to LHON vision loss can lead to lots of crying, and feelings of depression. It’s normal, but it’s important to work through the various stages of grief. Research about the emotional impact of LHON and practical suggestions about how to adjust are discussed in this video. The image illustrates the emotional journey.
Many families with other causes of blindness have a very different sequence of emotional adjustment. Often blindness occurs at birth, so the parents can deal with their shock before the child is aware. With LHON, both the individual affected and their loved ones must deal with shock and grief all at the same time, while striving to stay positive for the others.
One of the major challenges 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. Losing the ability to read standard text. Coping with loss involves grieving…mourning what’s been lost and adapting to what remains.
An aspect of LHON that can create additional emotional distress is the possibility of spontaneous recovery. The odds of spontaneous recovery differ based upon the specific mutation you have. The good news is that there is hope that you will be one of those whose vision improves, especially if you have the 14484 mutation, or participate in a clinical trial of a therapeutic product. The bad news is that this hope can make it difficult to fully adapt to the vision loss, hoping that you’ll return to “normal.” If your vision does not improve, then you may experience the depression and sadness of the initial vision loss all over again. Striking a balance between acceptance of vision loss and hope for vision recovery is an ongoing challenge of LHON.
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. Some with LHON vision wake up each day and curse the fact that their vision isn’t normal, then they just get on with it, and make that day the best it can be. Others eventually embrace their new lives as visually impaired, and enjoy the awareness that comes with recognizing that life’s obstacles can be overcome.
Since the LHON gene is passed maternally, some mothers feel a sense of responsibility for their child’s vision loss. Yet like all genes there’s nothing that can be done about it so it’s helpful to focus on all the good genes that were passed to your children that will help them cope with this disorder, rather than to dwell on the negative.
Connecting with others who have lost vision and who are leading rich, productive lives can help with the adjustment to LHON vision. Since LHON is rare it’s difficult to find others living nearby with the condition. One approach is to click on the Register tab at the top of this page and ask to be connected with local LHON families. Joining the LHON Facebook group offers lots of information and support, and there are local groups listed on the Community page of this site. Other possibliities are to connect with people with other vision disorders such as Retinitis Pigmentosis (RP) or Stargardt’s which are more common than LHON and are similar in that vision is lost at a relatively comparable age. However these conditions are different in that they are progressive. This gives the patient a longer timeframe to adapt to the vision loss, but creates a dimension of perpetual fear since those patients are always aware their vision will get worse, compared with LHON where the vision loss is rapid and profound.
The Hadley School for the Blind offers free online courses for people with vision loss and their families. You communicate with a teacher as needed toll-free or via email. They have courses such as “Self-Esteem and Adjusting with Blindness.”
Hadley - Self-Esteem and Adjusting with Blindness
The American Foundation for the Blind (AFB) has a resource called FamilyConnect, for parents of children with visual impairments. Several articles on the emotional impact of learning that your child is visually impaired are at:
Emotional Impact of a Child's Blindness
2. Mobility & Driving
When vision is lost, it’s natural to wonder how you’ll get around. Most with LHON vision retain their peripheral vision, which gives enough sight to walk around without seeming to be blind. Since there’s no visible symbol of the vision loss, others may not react appropriately. Some with LHON vision carry a white cane which helps make clear there’s vision loss; some use a guide dog, after they've acquired cane skills. Often, the local blind services organization, state rehabilitation program or school offers Orientation & Mobility (O&M) training which includes how to cross the street safely and how to access public transportation. These videos provides an overview of the services provided in O&M instruction, and information about how loved ones can provide support and assistance.
Modifications to the home can make life easier. Here are links to ideas to consider.
Home Modifications for People With Vision Loss
Creating Accessible Kitchens for the Visually Impaired
Transportation is a sudden, significant concern when LHON vision loss occurs. At first, with one good eye it seems okay to drive but it’s dangerous since depth perception is impacted. And since the second eye will almost always eventually lose vision as profoundly as the first eye, often surprisingly quickly, it’s important to be aware of when driving should end for safety reasons, despite the frustration that loss of independence can cause. While it's emotionally challenging to give up driving during the acute phase of vision loss, there are many in the LHON community who would acknowledge that they continued driving longer than it was safe, and regret it in retrospect. It's far better to stop driving a month too soon, than a day too late. In the U.S., it is illegal to drive in all except 3 states when the better eye is worse than 20/40. (NJ and WY-20/50; GA-20/60).
Legal Vision Requirements for Drivers in the US
Since driving is not an option for almost everyone affected by LHON, it’s helpful to live in an area where services can be easily accessed without a car. Locations can be assessed at this website.
Options such as Uber and Lyft, as well as paratransit, can be helpful.
3. Assistive Technology, Reading & Films
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, the remaining peripheral vision can allow many of those with LHON vision to read. Voiceover settings in cell phones, and computer software such as ZoomText, Kurzweil and JAWS, as well as the built-in accessibility features of other Apple products, are used by many with LHON. These Facebook groups are a very good resource.
iPhone and iPad Apps for the Blind and Visually Impaired Facebook group
Amazon - Echo, Dot, Alexa & Skills for Blind Facebook group
Another resources is the Hadley iFocus video series
These videos provide an overview of Assistive Technology options.
For individuals using Apple products, it may be helpful to contact their Support team trained in Accessibility Issues at:
877-204-3930.
Since each person's vision is different, it's important to try out each product to determine what is most effective. Some relatively new products of interest include:
Aira
eSight Eyewear
Orcam
Most insurance companies do not cover Assistive Technology equipment, while some Flexible Spending Accounts do cover it If you’re an adult and you work with your state’s Dept. of Rehabilitation, they may purchase some of this equipment as part of the “rehabilitation” process. 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 Dept. 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 the required 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. One way to do so is via the program called GiveForward:
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. Special MP3 players with DAISY format may be required to access these materials. Sources include:
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, such as:
This article describes some ways to access books, and also has a list of books about blindness.
Going to the movies and watching DVD’s and TV becomes a challenge, as much of the detail cannot be seen with LHON vision. Descriptive video provides the information that a vision impaired person cannot gather when watching a film or TV. To learn more about descriptive video and to watch an example, visit this site:
The Audio Description Project in Movie Theaters
For information about audio description on TV:
The Audio Description Project on TV
On online resource to find descriptive videos has both closed captioning (CC) and descriptive video (DV), so ignore the CC listings and select descriptive video in the drop down menu. Call the theater in advance to ensure it’s available for all theaters and all showings, and ask how early to arrive since the equipment is only rarely used so it may take a while to get it set up properly. Be sure they don’t set the audio to hearing impaired.
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.
4. Social Security
Once vision in both eyes is 20/200 or worse, it’s possible to apply for Social Security benefits in the US. There are two forms of Social Security benefits that may be applicable, SSI benefits depend upon income and assets, while SSDI benefits depend upon your work history. To get information about how Social Security works for those who are legally blind, check out this site:
Social Security for People who are Blind
This link provides a document which explains differences between standard SSDI and SSDI for the legally blind.
Disability Program Differences for Individuals Who are Blind
Note that after receiving Social Security benefits for 24 consecutive months for a disability, you automatically qualify for Medicare.
Medicare and Social Security
Setting up an appointment as soon as you are legally blind protects your benefits from the time the appointment is made. By reading the information and preparing information in advance, the process will go more quickly, though not all will qualify for benefits.
5. Rehabilitation
If the person with LHON vision loss is an adult, it’s worthwhile to contact your state’s Department of Rehabilitation to learn what they can do to assist in the adjustment to vision loss. A counselor specializing in blind clients will probably need all the same information provided to the Social Security Department—evidence of blindness, medical records, etc. Their process requires forms and meetings. Here's a list of VR programs. There is considerable variation from state to state and within different regions of the state.
Vocational Rehabilitation Programs by State
The goal of vocational rehabilitation services is primarily to help people with disabilities enter and/or remain in the work force. Thus, emphasis is placed on job training, use of adaptive aids, workplace modifications and working with employers. The career development of young people who are in transition from high school to post-secondary education or employment is also a priority for VRS.
Rehabilitation Counselors are the coordinators/case managers who provide help for the working age group. They assist individuals in developing a plan to learn adaptive skills, provide career counseling, provide vocational training opportunities and assist with job placement. Their priority is to help people get to work. Additional priority is given to those already employed who develop a visual disability and want to keep working. Such individuals receive services under “Retention of a valued employee” or “RAVE” case and given immediate attention.
Employment and job retention services through VRS 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. This might include provision of adaptive aids and devices, adaptive skills training, training in assistive technology, orientation & mobility, low vision services, or job assistance.
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 representative from a company that makes 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 working. This can include all the required assistive technology and, if appropriate, college tuition, books and supplies.
There are a wide range of options by which an adult affected by LHON can learn the skills they need to live successfully with LHON vision. They may find local organizations which provide support to individuals with vision loss. Or they may choose to attend a live-in center where such skills can be obtained. Local options can be found by searching for blind services in your area. Live-in locations include:
The Carroll Center, Newton, MA
Louisiana Center For the Blind
6. Education
Many of those affected by LHON vision loss are in high school or college. For those in elementary or high school, there is usually a vision specialist associated with the school or the school district who can support the student in the transition from fully-sighted to vision-impaired, usually called a Teacher of the Visually Impaired (TVI). 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 assistive technology, a notetaker, testing accommodations such as extra time and a reader, etc. However, since most students with vision impairments have had them since they were children and have been trained in living with vision loss before arriving at college, these centers may not be structured to provide a simple path for the transition from fully sighted to significantly vision impaired. These services may be found in the community at a local organization providing support to the Blind and Vision Impaired.
There is a Facebook group specifically for those managing education and LHON.
Navigating Education/School With LHON
To learn more about the government’s responsibility to educate children with disabilities consider this FAQ document:
Protecting Students With Disabilities
For ideas on how to inform teachers and classmates about LHON, here's how one student addressed it:
Off to College: Tips for Students with Visual Impairments
For students heading off to college, here are some tips:
Off to College: Tips for Students with Visual Impairments
There are many scholarships available to students who are vision impaired.
Christian Record Services Scholarship
Learning Ally's National Achievement Awards
Here are helpful links for vision impaired athletes:
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
Tips for Swimmers Who Are Blind or Visually Impaired
Blind Hockey
US Blind Hockey Facebook
Goalball
Rowing
How Athletes Who Are Blind or Visually Impaired Can Make an Easy Transition to Rowing
Tennis
International Blind Tennis Association (I.B.T.A.)
And many others...people with LHON have successfully played football, soccer and other sports when their teammates and coaches have been willing to work with them. For additional ideas check out:
VisionAware-Sports and Exercise with Visual Impairment
Encyclopedia of Sports and Recreation for the Blind
To obtain equipment, training funds or funds to travel to competitions in these activities, consider contacting an organization such as Challenged Athletes Foundation and applying for a grant:
Challenged Athletes Foundation
Other activities include online games. Resources include:
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.
Disneyland Services for Guests with Visual Disabilities
9. Resources
Most resources for the blind are for those who either became blind as children, or those who lose vision at a relatively advanced age. LHON vision loss 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 have gone through childhood without sight have a different sense of the world than those who were once fully sighted and lost vision as with LHON. People who lose sight after completing school, college and careers are impacted differently than those losing vision as teens or young adults. For that reason, resources created by individuals affected by LHON tend to be of value to others similarly affected. A good list of blogs and podcasts can be found here:
LHON Podcasts, Blogs and More
These resources were reviewed in this video:
General resources for the blind include organizations with 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 AFB’s Family Connect site.
Another helpful resource is 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 at:
UMDF-United Mitochondrial Disease Foundation
However, it’s important to keep in mind that LHON is very, very different from most mito diseases. Most mito diseases onset in childhood. Many affect several systems of the body at once, and generally not vision. Some are life-shortening. None of these descriptions match LHON, so those affected by LHON should be aware that their situation is quite different. The information is helpful in that researchers studying mitochondrial disease are studying the same issues as for LHON, but the same symptoms tend to be much different. You can call the UMDF Support Line for information and guidance about navigating a LHON diagnosis at: 1-888-317-8633.
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. Here's a professional genealogist explaining how to study your own maternal bloodline to learn about who in your extended family might carry the LHON mutation.
You might be wondering if you should tell your maternal relatives that they may carry a LHON mutation. Here's a video explaining why to alert maternal relatives, and a video you can send to your relatives explaining their risk and actions they could take to learn more.
Here's a video by a woman whose brother was diagnosed with LHON, and how his being affected by LHON impacted her life.
11. Lifestyle Choices
For people with LHON vision loss and for those carrying the LHON gene but not affected, there is usually a concern about what choices to make to increase the odds of spontaneous recovery and/or to reduce the odds of losing vision due to LHON. Living as healthy a life as possible is usually recommended by medical professionals who understand LHON. Most importantly, there has been research clearly linking smoking and smoke to LHON vision loss, including the following article:
Gene-Environment Interactions in LHON
12. LHON Plus & Mitochondria
LHON vision loss is caused by a mutation in the mitochondria. Most individuals with a LHON mutation either never experience any symptoms, or just lose vision. In some cases, other symptoms arise which can be described as similar to MS, or similar to other mitochondrial disorders. The videos below describe LHON Plus and Mitochondrial Disease. A LHONPlus website was created to assemble a range of information about it.
LHONPlus.org
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 is a helpful introduction about Navigating Employment with LHON.
This Facebook group can be a helpful resource.
Navigating Employment/Careers with LHON
These videos provide helpful information about Navigating Employment with LHON, including the Job Accommodation Network (JAN) and the National Industries for the Blind.
Information about the rights of employees with a disability, including legal blindness, can be found at:
Americans with Disabilities Act - Overview
Some ideas about careers and blindness can be found on this site:
8. Activities/Sports/Travel
It’s important to find sports and activities that can be done successfully with LHON vision.