You should know… Rachel Luehrs

Photo by Justin Katz
Photo by Justin Katz

At first glance, Rachel Luehrs, 26, looks like anyone else. For her though, some things require more than just a glance. Luehrs suffers from a rare eye condition that is slowly blinding her.

But rather than sulk, she’s taking inspiration from her mother, who has the same condition, and is helping to educate people about blindness as a Visionwalk chair for the Foundation Fighting Blindness.
Beyond that she maintains a positive attitude because, as she says, she’s losing her vision but not her sense of humor.

Why are you losing your vision?

I have a really rare eye condition and it’s called retinitis pigmentosa. The back of your eye is your retina and [mine] is degenerating. I say my movie screen is getting smaller. So what I see is getting smaller and smaller like tunnel vision.

Is it genetic?

Nobody else in my family has it except me and my mom. I have had my DNA sequenced and what came of it is that I know my kids will have it if I have kids. It is a little bit of a bummer, but the way I look at it is: they’re so close to finding a cure that I’m not stressed.

You maintain a very positive outlook. How do you stay so upbeat?

I’ve never seen anybody in my life who just sits there and says, “Woe is me.” I’m always drawn to the stories of people who fight through it all and find a silver lining. Especially my mother, she’s become a huge advocate. She’s trying to teach people how they can deal with what little sight they have instead of moping about [losing] it.

I’m also a very goofy person in general, and a lot of people say I’m always laughing. My strategy is to laugh about it. It’s cliché, but if you laugh at something you can’t be afraid of it.

How has this condition changed your relationship with your mother?

We don’t talk about it [often], because I don’t want to upset her. No mother wants her child to deal with something like that. She hasn’t talked to me about it because, in the same respect, as a mother if something is bugging her, she’ll go to my father. But on bad days, I know I can call her, confide in her and she’ll say, “I’ve been in your shoes. It’s OK.”

What is Visionwalk?

Visionwalk is like “the race for the cure.” It’s the FFB’s 5K and the foundation is a leading organization in the world researching and finding cures for diseases that are causing blindness.
I’ve had the privilege this year of meeting the founder, Gordon Gund, and he himself has retinitis pigmentosa. It was a powerful experience. He’s the reason my mother and I will be able to see again.

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  1. Just want to make sure Rachel and her mother are aware that there is an FDA-approved device for helping those who are blind from RP to regain some useful vision. The device is the Argus II retinal prosthesis, made by Second Sight Medical Products of Sylmar, CA. I believe that Johns Hopkins Med Ctr is an approved implantation center for the device. Please pass this information along to Rachel.


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