Losing Sight but Finding Strength: My Five Year Journey Living With Alpha-Gal Syndrome

For the last five years, Alpha-Gal Syndrome has shaped nearly every part of my life. I was only 19 and six months pregnant with my daughter when I first heard the words “alpha-gal.” At the time, doctors told me it was just an allergy to mammal meat. I had no idea that a single tick bite would change my life so profoundly. 

 What followed has been a journey of learning, surviving, grieving, and ultimately growing stronger than I ever imagined. 

 

Learning to Live in a New Body 

 

After my diagnosis, I poured myself into research. Separating real, science-based information from random online theories was overwhelming, but slowly I learned that Alpha-Gal Syndrome (AGS) is far more complicated than avoiding red meat. 

 

Suddenly, everyday items became potential threats medications, medical supplies, even the coating on certain pills. I tried to be careful. I tried to do everything right. But I still experienced anaphylaxis episodes that sent me to the hospital more times than I can count. 

 

The silver lining? I got to know the EMTs and hospital staff. Familiar faces made terrifying situations a little less terrifying. When someone knows what you have and how to help you, it brings comfort you can’t put into words. 

 

The Night Everything Changed 

 

Just when I thought I had a grip on AGS, my world shifted again. 

 

In May 2023 at the age of 22 out of nowhere, I was hit with the worst migraine of my life. I had no other symptoms, and I was scared to go to the new ER my old hospital had shut down, and I didn’t want to be labeled a drug seeker. So I tried to sleep it off. 

 

The good news: the migraine was gone the next morning. 

The bad news: my vision was gone too. 

 

I went to the doctor who had already scheduled me for testing. An MRI and MRA came back normal. She suggested it might have been a mini stroke, and that the damage could heal on its own. 

 

But months passed with no improvement. 

 

The Appointment That Broke Me 

 

Insurance delays meant waiting until January 2024 to see an eye doctor. After the first round of tests, the doctor asked me to return and see her father who had decades of experience. 

 

When he pulled the phoropter away from my face, I watched the color drain from his face. His first words were:  
“I don’t know what is wrong with your eyes, but it is above my pay grade.” 

 

My heart dropped. 

 

He explained that based on what he saw, if his suspicion was correct, there was a real chance I could lose an eye. He immediately arranged a next day appointment with a neuro-ophthalmologist. No wait list. No delays. He insisted it was urgent. 

 

I barely made it to my car before breaking down, calling my boyfriend at work and sobbing through the story. I called my mom next. Everyone was scared but they were with me. 

 

Searching for Answers 

 

Over the next months, I saw the specialist five times and underwent every eye test imaginable. 

MRI, MRA, CT scans some with contrast, some without. 

Endless blood work. 

Every possible condition was ruled out. 

 

Everything came back normal. 

 

Except for one thing: 

my optic nerves were damaged. 

My left optic nerve had turned completely grey, and my right partially grey signs of permanent injury. 

 

There is no surgery. 

No medication. 

No fix. 

 

Based on the sudden migraine, the vision loss, and the damage pattern, the neuro-ophthalmologist concluded I had most likely suffered a stroke. Today, I have 7% vision in my left eye and 69% in my right. 

 

Finding the cause became the next mission. 

 

A Procedure Gone Wrong 

 

My cardiologist ran every test: EKG, stress test, echocardiogram. All normal. Next was a TEE where a camera goes down your throat to look for clots or plaque. Again, normal. 

 

So the next morning, I went in for an implantable heart monitor to check for silent A-fib, a possible cause of strokes. 

 

It was supposed to be a quick, low risk procedure. Instead, it turned into a nightmare. 

 

I could feel the incision something that should not have been possible. They rushed to close me up, and within seconds of being wheeled into recovery, a nurse noticed a rash. My throat started to hurt. Three nurses stood at the end of my bed but no one was looking at me until I said: 

 

“I can’t breathe.” 

 

The look of terror on their faces will stay with me forever. 

 

One nurse my guardian angel sprang into action. She placed two more IVs, hooked me to monitors, and pushed medication after medication. 

 

I needed four rounds of epinephrine, then epinephrine through a breathing mask. My tongue, throat, and the roof of my mouth were all swelling shut. My mom was called upstairs, and the moment she walked in, I saw fear in her eyes I had never seen before even after all my previous anaphylaxis episodes. 

 

They were preparing to intubate me when, finally, the medication started working. 

 

I survived. But it was close. 

 

Two Years Later: Still No Answers 

 

My heart monitor remains implanted, but every reading has been normal. 

No clots. 

No plaque. 

No arrhythmias. 

 

Recently, researchers in Australia found a possible correlation between AGS and plaque and blood clots but correlation does not mean causation, and it’s still being studied. For now, the best guess is still that I had a stroke. 

 

And the cause remains unknown. 

 

Finding Hope Again 

 

Today, I am doing better. I was approved for the Xolair shot. It’s important to understand that Xolair is not a cure and does not allow me to eat mammal meat or certian mammal by products. 

 

What it does give me is a safety net a reduced risk of anaphylaxis if I’m accidentally exposed. Since starting it, I haven’t had a reaction, but I still avoid triggers just as carefully as before. No one with AGS can afford to gamble with their life. 

 

I’m still learning. Scientists are still learning. New information comes out constantly, and we’re all doing our best to keep up. 

 

 

Why I’m Sharing This 

 

My hope is that by sharing my story, someone else living with Alpha-Gal Syndrome feels less alone. Maybe you’ll understand your own symptoms a little better. Maybe you’ll feel seen. Maybe it will help you explain AGS to others. 

 

Whatever you’re facing vision loss, anaphylaxis, fear, confusion I want you to know this: 

 

You’re not crazy. 

You’re not weak. 

And you’re not alone. 

 

We’re all walking this unpredictable path together.