Amber McMahon has Stargardt’s Disease – what is that?

Stargardt’s disease is a form of Macular Degeneration. If you know what that is, it’s probably because you have an older relative who has it. It is pretty common in older people.

The disease causes central vision loss - a big blind spot right in the middle of my vision. The effect is something similar to living in an very airbrushed world, where the big picture is there, but details are not.

I can’t read normal size text at all. Text needs to be ridiculously big to read. I use both audio readers and magnification programs on my computer and phone, and sometimes a handheld magnifying glass.

I also can’t recognize faces at a distance of more than about 18 inches.

I only have use of my peripheral (side) vision, which doesn’t give me much detail. This makes it appear that I’m not looking directly at you.

If I had a dollar for every time someone has barked at me “why are you looking at my hair (or hat)??” or “what’s behind me that’s so interesting”… I would be the richest blind person around. Well, maybe second to Steve Wynn (He actually has my same disease. Don’t blame the diagnosis for his sexual misconduct, please! I am capable of keeping my hands to myself. Promise.)

As I spend more time around new people I begin to recognize body language, gestures, style, body type, voice, etc. It takes me a while, and I tend to “fake it till I make it”, which sometimes is not helpful. I’m working on it, getting better and better at explaining my condition early as I meet new people.

I’ve been dealing with this disease since adolescence. Yes, it’s a thing, but everybody has their thing. I’m not shy to talk about it. If you want to know more, just ask me. And yes, I have a superpower of hearing like a dog and no, I don’t need to see your face to catch you slacking in the back of my class.

What helps?

· Unfortunately, glasses or contact lenses won’t help me. Only magnification helps to enlarge the details so I can see them better.

· Patience and familiarity. The more I’m familiar with people and surroundings, the more my brain adjusts to the cues around me. I have a hard time recognizing faces from a distance greater than a couple feet away. This can be misunderstood as being aloof or disinterested, but that is not that case!