Suzanne's Story (Part 2): Treatment, Support, and Awareness

Content Note: This article was written by Suzanne Tremolada, founder of the Facebook support group "Living with Macular Degeneration." The views and opinions expressed in this article are strictly the author's. Please see contributor and treatment disclaimers located at the bottom of this page for appropriate disclosures.

My story: a recap

If you missed Part 1 of this article, you can find it here.

I was diagnosed in 1990 at age 35 with a genetic early onset of macular degeneration. In 2022, it was determined that I had Stargardt disease. There is no treatment for Stargardt disease.

After my diagnosis, went through a period of being emotionally low, frustrated, and isolated. I had no support group and didn’t know others dealing with vision loss. I had no resources.

After a decade of learning, I finally decided to compile all that I had learned to help those living with vision loss, especially those affected by macular degeneration. I wanted to help others become functional and engaged, and to create more peace and joy in their daily lives. After a synchronistic series of events, I felt very called to start the Living with Macular Degeneration group without hesitation.

Feelings of isolation, anxiety, and fear of the future

Vision impairment is known to be associated with isolation, depression, fear, and anxiety. Dealing with fear and anxiety is common. Fear of the future, injections, going blind, not getting needs met and not being able to function are things that often stem from these fears.¹

A few other topics of concern I commonly hear about are:

• Injections and injection issues
• Supplements and their side effects, when and who should use them
• Overcoming vision issues
• Not knowing how to accomplish things like reading, cooking, recognizing people etc.
• Issues with insurance coverage

Learning to live with macular degeneration

Living with macular degeneration is possible. There are solutions to most issues.

Macular degeneration affects our central vision; losing your central vision does not mean losing your vision completely. Some people with macular degeneration don't lose even their central vision completely. Most of them will not become totally blind.²

The biggest issues of not being able to drive, read, and recognize faces can be overcome. There are alternative forms of transportation. Magnification, text to speech technology, and switching to audiobooks can all assist with reading.

It takes willingness and openness to learn to do things in new ways. The self and the habitual patterns are the biggest obstacle.

Not all macular degeneration journeys are the same

The word blind is largely misunderstood. Being legally blind does not mean total blindness or darkness.

Our experience of macular degeneration varies widely from person to person. One person’s experience may not be yours. Only 10 to 15 percent of people with macular degeneration will progress to the wet form, and with new treatments available, advanced stages of AMD such as geographic atrophy can be managed and progression can be slowed.^3,4

Treatment and support are not one-size-fits-all

Treatments are optional, and everyone has the right to make their own medical decisions. Doctors don’t necessarily have all the answers. New and alternative treatments can be scary; however, remember all treatments now available were once new. Just because something has not been studied extensively doesn’t mean it has not been effective for some. Personal experience is valuable.

Support groups such as Living with Macular Degeneration and local or in-person groups are beneficial in connecting people with those with lived experiences, resources, and information. A group is a great place to ask questions your doctor hasn’t answered. A doctor takes care of your eye health, but when you walk out of their door, it is up to you to figure out how to live your life.