Here are some things you can expect along your MacTel journey.
Getting diagnosed
MacTel may be mild or not cause any symptoms at first, and because it may only affect your ability to see things up close, a simple eye chart test is not always enough to diagnose it.
Instead, your retina specialist will use what's called an Amsler grid eye test to look for wavy or dark areas in your central vision. They will then dilate, or widen, your pupils to examine your retina.
To confirm that you have MacTel, your retina specialist will take detailed pictures of your eye to look for changes in the retina.
Some of these tests include:
Fluorescein angiography (FA): This test uses a special retinal camera to take photographs. It can identify blockages, leakage, or anything not normal in the blood vessels that would contribute to vision problems
Color fundus photography: This is a quick test that captures detailed, color images of the retina. Unlike FA, which requires the injection of dye, color fundus photography is noninvasive
Optical coherence tomography (OCT): This high-tech scan takes a clear picture of your retina. It's like an ultrasound, but uses light instead of sound to create detailed images. OCT can look at a very important layer of your retina where photoreceptors are located
Depending on the stage of your disease, your retina specialist will choose the most appropriate tests for you. It’s important to discuss with them which tests are right for you.
The optometrist had me go through the eye chart...he asked why I skipped 2 letters on the left. I was confused because I didn't see any letters.”
- Person living with MacTel
How does MacTel change and progress?
Although a diagnosis of MacTel may feel scary, your symptoms can be managed. You will likely lose vision gradually in both eyes, particularly in the center of the field of vision, which is what you see when you look straight ahead. MacTel progresses differently for everyone, but in most cases, your vision changes gradually. This may give you more time to adjust to your condition and learn to cope with its challenges.
In some patients with late-stage MacTel, abnormal blood vessels may grow in the retina, a condition known as neovascularization. This can lead to further vision problems.
MacTel progresses differently for everyone. It is important to schedule regular follow-ups with your retina specialist to track how quickly your condition is progressing.
How can MacTel affect your daily life?
You may not even notice symptoms of MacTel at all for a while, but as the disease advances, you may find it affecting your day-to-day life, making it harder to do things such as:
Read
Work
Drive
This loss of daily activities may affect your independence, but you can take steps to ensure and maintain independence, such as making life adjustments and building your own network of support.
If you start to feel that MacTel is affecting your mental and social well-being, talk to your doctors about available support resources.
Reaching out to family, friends, or advocacy groups can get you the support you need to cope with MacTel.
When I wake up, I see very blurry. It gets better as the day goes on, but everything seems blurry.”
- Person living with MacTel
How is MacTel monitored?
Once you are diagnosed, your retina specialist may ask that you follow up anywhere from every 3 to 12 months to monitor how your vision may have changed. Because MacTel may only affect your ability to see things up close, a simple eye chart test may not be enough to monitor it.
That’s why it’s important to share with your retina specialist all changes in your vision and how these changes may have impacted your life. Also, be sure to let your optometrist and ophthalmologist know that you have been diagnosed with MacTel.
What are the treatments for MacTel?
Currently, there are no US Food and Drug Administration (FDA) approved treatments for MacTel. That is why it is important to share all of your symptoms with your retina specialist so that you can discuss your options and come up with a plan to manage MacTel together.
At Neurotech, we are focused on therapies for conditions that impact vision, including MacTel.
Neurotech is constantly innovating new ways to protect against vision loss. We’re committed to providing education about MacTel and partnering with support and advocacy groups to meet the needs of this community.
