Inherited retinal dystrophy (IRD) is a group of rare eye diseases. If you have IRD, you may get blurry vision, sensitivity to light, or have trouble seeing colors. Over time, you may lose some or all of your vision.
Although treatment for IRD has come a long way, there’s no cure. Here are steps you can take to make the most of the sight you have left.
Get Regular Eye Exams
Your eyes say a lot about your overall health, and routine checkups are a good way to spot early vision loss or track how your sight changes.
If you have IRD, there are two types of exams you may need:
Routine eye exam. Even people without IRD should get these checkups. Kids usually need one every year, and adults may be able to go every 2 years. But your eye doctor will let you know how often to come in.
During an eye exam, your optometrist or ophthalmologist will likely check the following:
- General health of your retina
- How well you see up close or far away
- Your central or side vision (peripheral)
- The surface and back of your eye
- If you can tell the difference between colors
Low vision exam. There are specialized tests used to diagnose IRD, and you won’t need these lengthy exams on a regular basis. But your doctor may check for specific low vision issues as your sight changes. These visits tend to be longer than a routine eye exam.
During a low vision exam, your eye doctor will check your eye health. But they’ll also look for how IRD affects your daily life, including:
- How well you see inside and outside
- If you can easily watch television
- If you can see images and text on a computer screen
- If you have trouble seeing details, like reading books or threading a needle
If you have IRD, it’s important that you see an ophthalmologist or optometrist who specializes in low vision to assess your needs. To find a specialist near you, ask your eye doctor or search the internet for “low vision clinic near me” and see what pops up.
You’ll also find lists of low vision specialists online through:
- The American Academy of Ophthalmology directory
- The APH Directory of Services (American Printing House for the Blind)
- The Academy of Certification of Vision Rehabilitation and Education Professionals
- The American Occupational Therapy Association
Learn Orientation and Mobility Training
IRD can impact how you move through the world. For example, you’re more likely to bump into things or fall if you can’t see things very well. And studies show people with vision problems are less active and stay home more often.
The good news is you can learn to adapt to life with sight challenges. Ask your doctor to refer you to a low vision rehabilitation program. There, you’ll work with specialists who’ll teach you how to use your current sight along with your other senses to get around safely.
If you have low vision, orientation and mobility training can help you do daily things like:
- Cross the street
- Walk around indoors
- Figure out which direction you’re facing
- Balance so you don’t trip
- Exercise
You can also learn to:
- Use public transportation
- Move with canes and other devices
- Find your way through public places
- Get on elevators
- Make your way through crowds
Tell your low vision rehab specialist exactly what spaces you need help navigating. They’ll help you find ways to move safely no matter where you need to go.
Use Low Vision Aids
These are products or services that make things easier to see or read. They might enhance images by making them bigger, brighter, or sharper. Some devices can read text to you.
A low vision specialist can help you find out what kind of tool will help you most. But these aids come in handy if you need to do lots of everyday things. That might include reading a book, jotting down notes, driving places, making a meal, or watching television.
Assistive devices for low vision might include:
Optical magnifiers. These devices use special lenses to boost your vision. Some examples include:
- Handheld, video, or stand magnifier
- Magnifying reading glasses
- Clip-on telescope for your glasses
- Monocular or binoculars
Electronic devices. There are lots of high-tech tools to help people with low vision. Some examples include:
- Portable or desktop digital magnifiers
- Tablets or laptops
- Screen-to-text speech readers
- Low vision websites or smartphone apps
And take advantage of any low vision features on your smartphone. For example, most of these devices let you zoom in on the whole screen or make lines of text bigger. You can also adjust the brightness and contrast so it’s easier on your eyes.
Wear Sunglasses or Tinted Lenses
Pick shades that block ultraviolet (UV) light from the sun. UV rays can harm your retina or and worsen vision loss. For some people with IRD, blue light (like the kind from computer screens or the sun) might be a big problem. Choose sunglasses with brown or amber lenses to filter out more of this kind of light.
Some people with IRD are extra sensitive to indoor and outdoor light. This is called photophobia. For these folks, red-tinted contact lenses may lessen eye pain, improve vision, and boost quality of life. Ask your doctor if they’re right for you.
Get Better Lighting
People with IRD often need more light to read or see things compared to folks without low vision. Your doctor might suggest you carry a higher-watt pocket flashlight or aim a gooseneck lamp directly at whatever task you’re doing.
Meet with a low vision specialist if you’re not sure how to improve your lighting. They can go over special tools designed for people with low vision. That might include special lamps or lightbulbs that mimic natural daylight, reduce glare, boost contrast, or make things easier to read.
What Else Can You Do?
Keep the conversation going with your eye doctor. They’ll let you know about all your treatment options, including any gene therapies that may be available for your type of IRD.
And let your doctor know if you’re interested in joining a clinical trial. You may be able to get new medications that haven't been approved yet.
You can also add your name to the My Retina Tracker Registry. This is a research database geared toward people with IRD and their families. It’s a free service backed by a nonprofit group called the Foundation Fighting Blindness.
