Suzanne's Story: Using Our Talents for Advocacy and Community Support

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.

I was diagnosed in 1990 at age 35 with a genetic early onset of macular degeneration. Originally, with genetic testing, it was determined to be unidentified. Around 2022 it was determined with the same genetic sample to be Stargardt disease. There is no treatment for Stargardt disease.

My early diagnosis journey

Initially, I experienced delayed dark adaptation and a need for contrast.

I realized 1 eye had become dominant while driving onto the freeway in my minivan with my young children in car seats. I became aware that my left eye was not engaged. When I engaged that eye, I experienced distortion and could not tell which lanes the cars were in. It was frightening.

I allowed my right eye to be dominant again and arrived safely home. I checked in with my optometrist, who referred me to a retina specialist. My first retina specialist did not do genetic testing. I have had 4 retina specialists.

Further difficulties with my vision

I had no problem driving until my mid-40s; however, I began limiting my driving area. During this period, it became more difficult to read and recognize faces.

I stopped driving in 2008 and was officially declared legally blind in 2013. I, however, know now that I had undiagnosed symptoms as early as age 13. Reading was difficult when we began reading small-print paperback books in middle school. When I took driver training, I discovered that I had poor depth perception and noticed the letters in the eye test were sagging.

Becoming more involved in spirituality and advocacy

I 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.

Eventually, I got involved in personal and spiritual development. I understood the importance of sharing my unique gifts and talents with the world. I became a Certified Emotional Freedom Technique (EFT) Practitioner.¹

This technique helped emotionally. I learned many meditations, energetic tools, and methods of clearing energy. I learned to look at the world as energy and know what was mine and what belonged to others. The meditations opened up my peripheral vision.

I also became a Certified Spirit Coach and Group Facilitator trained in the Spirit Coach Methodology, and a Certified Self-Healing Practitioner trained in natural vision improvement and kinesthetic awareness. This work helped me to utilize the vision I do have.

Founding my own support group

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.

Initially, I wanted to start a blog, write a book, and develop a program that utilized all that I had learned. It became more than I wanted to take on, so it never got off the ground.

Instead, I began to join groups on Facebook, even those related to macular degeneration. I realized how much I had to offer and how unique it was. After a synchronistic series of events, I felt very called to start the Living with Macular Degeneration group without hesitation.

Developing the group's mission

The mission: to get functional, stay engaged, and create more peace and joy in the lives of those living with macular degeneration.

I had gone from feeling frustrated, isolated, and low to being functional, engaged, and feeling at ease and peaceful in my daily life. I wanted to share so others could experience this.

One of the best things that happened for me was finding others who were living with vision loss. My personal purpose is to be a light in the world. The group offers me a sense of fulfillment, and it is a joy to help others. It is something I look forward to multiple times per day.

Another intention in the group is to provide a place for support and the opportunity to share personal experiences, ask questions, and voice concerns. I am clear that I am not an expert, only an expert on my own experience. For instance, injections are received by many, but I have no experiences to share... so I don’t.

Laying the groundwork for a support community

Living with Macular Degeneration is now a worldwide group approaching 14,000 members. There are varied experiences and various levels of expertise. Together, we are stronger.

I am also the President of Vision Impaired of Marin (bvim.org), a local nonprofit. Through my years of association, I have gathered many resources as well as information that I also share in the group.

Developing a group identity

First, I selected a name and did a little online search to see what was already out there. I created a logo. I took a course on blogging before this, which helped guide me on how to write.

I made a list of things I wanted to share. My personal stories were inspired by tools, practices, tips, information, and resources that made a difference in my daily life. Consequently, I don’t just share stories; I give solutions to seemingly difficult issues.

Sharing my story

Eventually, I took another free course that inspired me to create a "mind map." It was somewhat difficult for someone legally blind, so it took the form of files and lists on my computer. I kept writing regularly and sharing in the group.

I started the group in 2019, and in 2021, I became a grandma. Babysitting limited my time for writing, but I intend to get back to that. Fortunately, I had a collection of writings I could refer to in the group. I do this by posting links in the comments.

Learning from other support community leaders

There are enough people in the group that I have consistent content to respond to without creating anything new. All the people are experts in their own experiences, just like me. However, I do have a unique set of knowledge and experiences because of my background.

I learned from others who had groups: It was advised to make the group visible on Facebook. I did some online research about whether to have a private or public group. I chose public in order to have a broader reach.

Curious about hot topics in the macular degeneration community? Want to learn more about how to find or give support to communities of patients with Stargardt disease, geographic atrophy, or other conditions? Stay tuned for Part 2 of this article, coming soon!