Patient Resources

Living with MacTel

Newly Diagnosed? There are many ways people with all types of macular diseases can adapt to their changing vision.

Low vision rehabilitation & occupational therapy

1. Low vision rehabilitation is like any other kind of physical therapy in that it requires a specialist to train patients in strategies to improve their functioning. Occupational therapists, and especially low vision rehabilitation specialists, can recommend lifestyle changes, such as:
   • How to adapt your home for safety and easy navigation
   • Labeling medications or things that are small and/or difficult to see/read
   • Improving lighting conditions at home or the workplace
   • Instruction on using tools or devices to make tasks easier

 Preferred Retinal Locus (PRL)

PRL involves shifting your vision slightly to see something more clearly. This type of shift often happens naturally, but low vision rehabilitation can help train a patient to do this more effectively.

Therapeutic devices

Sometimes the use of different types of tools or technologies are recommended by your health care provider. Some examples include:

1. Prescription lenses
2. Electronic and/or portable magnification devices
3. “Text to voice” devices (including clocks, timers, blood pressure monitors, etc.)
4. Color-coded organizers (especially for pill bottles)
5. Wearable magnifying devices and telescope

Mobile device apps/technology

There are many different apps or technology that can help make life with impaired vision easier.

1. Reading:
   • AIRS-LA (newspapers, books, magazines, etc.), Audible (audio books), Voice Dream Reader (text-to-voice that can read anything with text)
   • National Library Service offers free audiobooks and braille materials
2. Technology:
   • Electronic readers, such as the Kindle, can assist readers with zoom and read-aloud features. Additionally, patients have opted for larger computer or monitor screens.
   • AFB’s Digital accessibility service: their team will ensure that all of your digital assets (phone, TV, computer, etc.) can continue to be of easy use for you as your eyesight decreases.
3. Educational:
   • AFB CareerConnect (navigates employment options for the visually impaired)
4. Hadley offers free educational audio podcasts on daily living, adjusting to vision loss, recreation, technology, work, braille, staying active, volunteering, air travel, and life after vision loss.
5. Identification:
   • Aira (interpretation and assistance by trained agents), EnvisionAI (recognizes objects, text, and people using smartphone camera and narration), Magnifier (zooms into objects and adds light

Keep your eyes healthy

1. Diet: A diet high in antioxidants and other nutrients, such as lutein and vitamin E, can help support eye health
2. Smoking cessation: Smoking speeds up macular degeneration, so quitting will likely help slow vision loss
3. Exercise: Strengthening your heart muscle can help it pump more oxygen-rich blood to the eyes and can prevent obesity, which puts you at higher risk for macular degeneration.

Support Groups & Counseling

Mental health is as important as physical health. Your health care provider or a low vision specialist may be able to provide you with resources and information on support groups for people with vision loss or refer you to a therapist or counselor to address emotional concerns related to your diagnosis.

1. AFB offers “Vision Aware” which is a free resource that helps adults who are new to vision loss continue to live full and independent lives. They offer services surrounding:
   • Supportive community groups, vision rehabilitation, local services, caregivers, healthcare providers, traveling, reading, writing, mobility, recreation and navigating your career.

What To Expect When Getting Retinal Imaging for MacTel

In addition to collecting information from the patient (medical and ocular history, family history, symptoms they’re experiencing) an ophthalmologist will examine the eyes using several examination and imaging techniques including:

1. Slit Lamp Biomicroscopy:

An exam you have likely received during routine eye appointments, where you rest your chin on the device and shines a light on your eye and looks through a microscope.

Changes that the doctor will look for during this exam to determine whether the patient has MacTel include:

• Changes in retinal transparency (grayish areas in the retina)
• Crystals (small yellow or white crystal-like deposits in the retina)
• Abnormal retinal blood vessels (abnormally shaped, dilated/widened vessels called “telangiectasia”)
• Accumulation of pigment (seen as dark, brownish lesions in the retina)
• Rarely, neovascularization (newly formed, leaky blood vessels) and/or bleeding in the retina

2. Color Fundus Photos:

An imaging technique that can capture images of what the doctor sees during the slit-lamp examination.

3. Optical Coherence Tomography (OCT):

An OCT scan results in very high-resolution images of the retina, which allow the doctor to “look inside” your retina with a cross-sectional view (they can look at the layers of your retina from the side-view). Changes that the doctor will for in the OCT images to determine whether the patient has MacTel include:

• Cysts (little cavities in your retina)
• Disruptions of certain retinal layers (mainly the layers where our photoreceptors are located)
• Changes that show increased reflectivity (“hyper-reflectivity”, which represents vascular changes and/or pigment that is migrating or growing in size)
• Rarely, neovascularization (see explanations above)

4. Fundus Autofluorescence images:

In these images, doctors will look for areas of increased or decreased autofluorescence, compared to what they would see in a healthy eye without MacTel.

5. Blue Light Reflectance images:

Blue light is shined into the eye where it is absorbed and reflected differently by retinal tissues. The pattern of blue light reflectance will differ in a retina with MacTel than in a healthy retina.

6. Fluorescein Angiography:

These images allow doctors to view the blood vessels in the back of your eyes, so they can assess them for any abnormalities and whether there are any leaks in the vessels.