My MacTel Journey

In the beginning

In 2022, I went in for what I thought was just a normal eye appointment — a quick checkup and new glasses, nothing more. But that day changed everything.

During my exam, my optometrist noticed something unusual on my eye scan. He didn’t say much, just that I needed to see a retinal specialist. I remember feeling uneasy but hopeful it was nothing serious.

At my first visit with the retinal specialist, I went through a series of tests. I had already done some research, preparing myself for a diagnosis like macular degeneration or retinopathy — something I at least recognized. I thought I was ready for whatever news he had.

But nothing could have prepared me for what he said next.

He walked into the room and said, “You have MacTel Type 2.” I just stared at him. I had never heard of it. He went on to explain that there was no treatment and no cure. He mentioned a trial for an experimental treatment waiting for FDA approval, but nothing was available yet.

Then came the words that still echo in my mind: “You’re going to lose your central vision.”

He said he’d only seen one other patient with this disease in thirty years of practice. I sat there in disbelief. My mind couldn’t catch up with what I was hearing. Go blind? How soon? What does this mean for my life? For my independence?

I walked out of that office holding a follow-up appointment slip for six months later — and absolutely no answers. I didn’t even know what questions I should have asked.

Over the next few weeks, panic slowly took over. Every morning I woke up and wondered, Is today the day my vision changes? What if I can’t see tomorrow? The thoughts came in waves, each one heavier than the last. Would I lose my driver’s license? My job? My ability to see the faces I love?

I began writing every question and fear on scraps of paper — anything that came to mind. It became my way of coping, of trying to find control in something I couldn’t control.

I scoured the internet day and night, searching for hope, for answers, for anything. But MacTel is so rare that information was scarce. It was lonely — like shouting into the dark.

Then, after months of searching, I stumbled upon a Facebook group for people living with MacTel. And for the first time, I exhaled.

There were others like me. People who understood the fear, the confusion, the heartbreak — and the strength it takes to face something so uncertain. Reading their stories made me feel less afraid, less alone.

That community became a lifeline. I realized that even though MacTel Type 2 is rare, I wasn’t invisible. My story mattered. Our stories matter.