Sisters with Rare Retinal Disease Advocates for Research and Awareness

DULUTH, Minn. — Paige and Nora Wagner of Duluth don’t share the typical sisterly bond.

They’re bonding over what most would see as a situation that could bring anyone down.

“I couldn’t see in the dark. So, my mom noticed that when we go out in the mornings I would be shuffling because I couldn’t see the ground to get to the car. So, we went in, did the testing, and it came back that I had it,” said Paige Wagner.

Several other family members share the same condition.

“Some of the other symptoms if you will- include slight color blindness. so, the overall end result is, so it’s tunnel vison. So, we lose our peripheral vison, we have very poor peripheral vision right now. Until you eventually just get spots of vision in your vision field,” said Nora Wagner.

It’s called- Retinitis Pigmentosa. It affects everyone differently, and the eyesight can regress at a different pace for each person.

“The breakdown of it is, there’s things in your eyes called rods and cones. And they are what receive light and perceive light in your eyes. And those have a shelf life of 20 years. Which is why our family members were hitting legal blindness around that age,” explained Nora.

This rare condition is genetic, the sisters’ grandma, and aunt also inherited it as well.

“And your body is supposed to create proteins that feeds the rods and cones to keep them alive and keep them moving.” continued Nora.

The girls were tested and diagnosed at 7 years old.

“With Retinitis Pigmentosa, your body either doesn’t create those proteins, or creates toxic proteins that can kill off the rods and cones,” said Nora.

But with being dealt these cards in life, Nora and Paige have learned to navigate life their own way.

“We were both competitive dancers. And so, it was a constant battle backstage being like ‘Don’t forget Paige and Nora backstage, you know, they can’t see. Literally every dance class, recital, every- remember Paige and Nora. Somebody grab Paige and Nora’,” said Nora.

“Growing up with it, made it a lot easier to accept. Because I got to see how people live with it every day. And being able to model that and go ‘Oh, just because I’m going blind, doesn’t mean I can’t do things. It might be a little harder, but you can still do them,” said Paige.

But their diminishing eyesight didn’t make the duo lose sight for answers.

The two advocated for research, and were invited to participate in extensive testing, and passed initial screening.

The research itself is still very brand new, but with the potential opportunity to progress in testing, there’s some mixed feelings.

“I’m a little nervous. I’m really excited, but also, it’s an injection in your eye. Which, it’s a little nervous. But the end justifies the means. Honestly, all of this has been so worth it, to go through all of this. And even if, like she said, in a control group or something, it’s still, there’s still a chance that the further this goes, the more opportunities there’ll be. And also, just being able to be a part of it now at the early stages and knowing that later it can help so much, so many other things other people, it’s really exciting,” said Paige.

The girls also have a go-fund me set up that would cover potential expenses ranging from travel to medical bills.

They say, “We appreciate every donation, share, and interaction, and thank you profusely for giving us the gift of sight.”