Table of ContentsView AllTable of ContentsVisual & Physical ChangesSupportPractical AdviceAccommodations
Table of ContentsView All
View All
Table of Contents
Visual & Physical Changes
Support
Practical Advice
Accommodations
Macular telangiectasia type 2(MacTel2) is an eye disease that begins during adulthood and causes a gradual loss of vision in both eyes. Living with MacTel2 means making adjustments so you can function as well as possible with vision loss and learning to manage the emotions that come from living with a disability.
This article describes tips for practical ways of coping with MacTel2 and resources for emotional and social support for you and your loved ones.
Ekaterina Vasileva-Bagler / Getty Images
MacTel2 Visual and Physical Changes
The effects of MacTel2 can blur your vision, making it difficult to see details and interfering with your ability to read. It can also be hard to see when it’s dark. These changes can impact your life.
You will need to make some adaptations to your daily life so you can function as independently as possible and still do the things you want to do. You might consider modifying your home and work environments to maintain as much of your lifestyle as possible.
Tips to consider include:
You may also need to make adjustments if you have trouble cooking, watching television, or recognizing people.
Personalized Recommendations
It’s important that you ask for personalized recommendations from youreye doctor’s office. They may tailor instructions to the severity of your vision loss, the treatments you are using, and your overall health, abilities, and lifestyle.
Getting a vision test andeye examinationto determine whether it is stillsafe for you to driveis a key component of maintaining safety while coping with vision loss.Continuing to drive with vision impairment is dangerous for you and others. If you can continue driving, you may consider getting a GPS and using the audio instructions.
Low-Vision ResourcesWhile MacTel2 is a rare disease, vision loss is not uncommon.Macular degeneration, which causes symptoms similar to MacTel2, is one of the most common causes of adult vision loss.You might not be able to find community resources specifically tailored to MacTel2. Still, you can find helpful resources that might be directed to adults with macular degeneration orsimilar types of vision loss. For example,specialized glassescould be an option for you.
Low-Vision Resources
While MacTel2 is a rare disease, vision loss is not uncommon.Macular degeneration, which causes symptoms similar to MacTel2, is one of the most common causes of adult vision loss.You might not be able to find community resources specifically tailored to MacTel2. Still, you can find helpful resources that might be directed to adults with macular degeneration orsimilar types of vision loss. For example,specialized glassescould be an option for you.
While MacTel2 is a rare disease, vision loss is not uncommon.Macular degeneration, which causes symptoms similar to MacTel2, is one of the most common causes of adult vision loss.
You might not be able to find community resources specifically tailored to MacTel2. Still, you can find helpful resources that might be directed to adults with macular degeneration orsimilar types of vision loss. For example,specialized glassescould be an option for you.
Emotional and Social MacTel2 Support
As your vision declines, you may needassistance and supportfrom your family, roommates, close friends, or coworkers.
It can be difficult to accept that you are losing your vision. It’s important to acknowledge that emotional challenge and seek support from professionals, such as a therapist or counselor. You could consider scheduling an appointment in person or online.
Late Diagnosis or Misdiagnosis
Since MacTel2 is not common, the diagnosis might be delayed, as other, more common causes of vision loss are often considered first. It’s also possible that you were initially misdiagnosed with another cause of vision loss.
Learning that you have this progressive and rare disorder can make you feel alone and uncertain of what to expect. You must consider these factors and acknowledge the emotional difficulty of adjusting to a late or changed diagnosis.
Hobbies
Many enjoyable activities require good vision. It can be hard to give up doing something you love—such as gardening, golf, knitting, or drawing.You can continue to participate in at least some of your hobbies, but you might need to make some adjustments in your techniques to adapt to your vision loss.
Practical Advice With MacTel2
In addition to considering the medical therapies available, you can do several things to help maintain your safety and quality of life.
Changes you might make in your environment include:
Traveling With Impaired VisionSince MacTel2 begins during adulthood, it can come at a time when you’re ready to enjoy retirement or traveling. You can still safely travel with MacTel2, but you may need to make special arrangements.If you need a companion to help you navigate the airport, consider asking for accommodations, such as wheelchair assistance. You might also look into booking a guided tour on trips so someone who is familiar with the location can navigate directions for you.
Traveling With Impaired Vision
Since MacTel2 begins during adulthood, it can come at a time when you’re ready to enjoy retirement or traveling. You can still safely travel with MacTel2, but you may need to make special arrangements.If you need a companion to help you navigate the airport, consider asking for accommodations, such as wheelchair assistance. You might also look into booking a guided tour on trips so someone who is familiar with the location can navigate directions for you.
Since MacTel2 begins during adulthood, it can come at a time when you’re ready to enjoy retirement or traveling. You can still safely travel with MacTel2, but you may need to make special arrangements.
If you need a companion to help you navigate the airport, consider asking for accommodations, such as wheelchair assistance. You might also look into booking a guided tour on trips so someone who is familiar with the location can navigate directions for you.
Accessing Low-Vision Accommodations
Depending on the severity of your vision loss, you may qualify for disability accommodations at work or in your community. Sometimes people who have vision loss can get special equipment at work to be able to carry out tasks.
If you’re using public transportation, you may be able to sit near the front of the bus so you can see or hear the stops more clearly. Additionally, you might be able to get designated seating in a theater or movie so you can see and hear the entertainment better.
Qualifying for disability benefits if you can no longer work depends on the type of work you do, the severity of your vision loss, and whether the disability prevents you from being able to carry out your work.
Regulations differ from one workplace to another and from one type of employment to another. You will need to check on the benefits you qualify for with your employer and your disability coverage.
What Is the Compassionate Allowances Program?
A Word From Verywell
—ANDREW GREENBERG, MD, MEDICAL EXPERT BOARD
Summary
Macular telangiectasia type 2, or MacTel2, causes gradual vision loss that affects many aspects of life, interfering with independence, work, and enjoyment.Treatments may slow the vision loss.
People living with MacTel2 vision loss need to make adjustments to daily life. It can help to discuss specific recommendations with your eye clinic providers. Some tips include using larger font when reading, color-coding objects, and improving the lighting in your environment.
Additionally, you and your family may benefit from speaking with a therapist about your feelings and concerns, as it’s important to acknowledge your reactions to your diagnosis and its effects on your life. For some people, joining a support group or a community of people who also have vision loss can be helpful as well.
You aren’t alone in dealing with vision loss—reach out for help so you can get the best care for all aspects of your condition—medical, practical, and emotional.
4 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Macnamara A, Chen CS, Davies A, Sloan C, Loetscher T.Low vision devices for age-related macular degeneration: a systematic review.Disabil Rehabil Assist Technol.2023;18(7):998-1010. doi:10.1080/17483107.2021.1966523Madheswaran G, Ramesh SV, Pardhan S, Sapkota R, Raman R.Impact of living with a bilateral central vision loss due to geographic atrophy-qualitative study.BMJ Open.2021;11(7):e047861. doi:10.1136/bmjopen-2020-047861Miller A, Crossland MD, Macnaughton J, Latham K.Are wearable electronic vision enhancement systems (wEVES) beneficial for people with age-related macular degeneration? A scoping review.Ophthalmic Physiol Opt.2023;43(4):680-701. doi:10.1111/opo.13117Taylor DJ, Jones L, Binns AM, Crabb DP.‘You’ve got dry macular degeneration, end of story’: a qualitative study into the experience of living with non-neovascular age-related macular degeneration.Eye (Lond). 2020;34(3):461-473. doi:10.1038/s41433-019-0445-8
4 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Macnamara A, Chen CS, Davies A, Sloan C, Loetscher T.Low vision devices for age-related macular degeneration: a systematic review.Disabil Rehabil Assist Technol.2023;18(7):998-1010. doi:10.1080/17483107.2021.1966523Madheswaran G, Ramesh SV, Pardhan S, Sapkota R, Raman R.Impact of living with a bilateral central vision loss due to geographic atrophy-qualitative study.BMJ Open.2021;11(7):e047861. doi:10.1136/bmjopen-2020-047861Miller A, Crossland MD, Macnaughton J, Latham K.Are wearable electronic vision enhancement systems (wEVES) beneficial for people with age-related macular degeneration? A scoping review.Ophthalmic Physiol Opt.2023;43(4):680-701. doi:10.1111/opo.13117Taylor DJ, Jones L, Binns AM, Crabb DP.‘You’ve got dry macular degeneration, end of story’: a qualitative study into the experience of living with non-neovascular age-related macular degeneration.Eye (Lond). 2020;34(3):461-473. doi:10.1038/s41433-019-0445-8
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Macnamara A, Chen CS, Davies A, Sloan C, Loetscher T.Low vision devices for age-related macular degeneration: a systematic review.Disabil Rehabil Assist Technol.2023;18(7):998-1010. doi:10.1080/17483107.2021.1966523Madheswaran G, Ramesh SV, Pardhan S, Sapkota R, Raman R.Impact of living with a bilateral central vision loss due to geographic atrophy-qualitative study.BMJ Open.2021;11(7):e047861. doi:10.1136/bmjopen-2020-047861Miller A, Crossland MD, Macnaughton J, Latham K.Are wearable electronic vision enhancement systems (wEVES) beneficial for people with age-related macular degeneration? A scoping review.Ophthalmic Physiol Opt.2023;43(4):680-701. doi:10.1111/opo.13117Taylor DJ, Jones L, Binns AM, Crabb DP.‘You’ve got dry macular degeneration, end of story’: a qualitative study into the experience of living with non-neovascular age-related macular degeneration.Eye (Lond). 2020;34(3):461-473. doi:10.1038/s41433-019-0445-8
Macnamara A, Chen CS, Davies A, Sloan C, Loetscher T.Low vision devices for age-related macular degeneration: a systematic review.Disabil Rehabil Assist Technol.2023;18(7):998-1010. doi:10.1080/17483107.2021.1966523
Madheswaran G, Ramesh SV, Pardhan S, Sapkota R, Raman R.Impact of living with a bilateral central vision loss due to geographic atrophy-qualitative study.BMJ Open.2021;11(7):e047861. doi:10.1136/bmjopen-2020-047861
Miller A, Crossland MD, Macnaughton J, Latham K.Are wearable electronic vision enhancement systems (wEVES) beneficial for people with age-related macular degeneration? A scoping review.Ophthalmic Physiol Opt.2023;43(4):680-701. doi:10.1111/opo.13117
Taylor DJ, Jones L, Binns AM, Crabb DP.‘You’ve got dry macular degeneration, end of story’: a qualitative study into the experience of living with non-neovascular age-related macular degeneration.Eye (Lond). 2020;34(3):461-473. doi:10.1038/s41433-019-0445-8
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