WASHINGTON - Imagine going through life and having your vision slowly taken away from you. Imagine being told that by the time you’re 40-years-old you will be blind.
That is the situation for Rachel Leuhrs.
Rachel has Retinitis Pigmentosa. A disease that’s slowly deteriorating her retina, giving her tunnel vision, chipping away at her peripheral vision and robbing her of her night vision.
Rachel is now 26-years-old, doctors say she’ll be blind by age 40.
“My movie screen is getting smaller and smaller,” Rachel said. “So the image has a smaller screen it can be projected on.”
The disease is inherited, Rachel’s mom has it. She discovered it when she was in her 20’s after picking up a pair of eyeglasses.
At age 13 is when Rachel’s parents decided to tell her that she had inherited the gene. She says it explained why Halloween was never her favorite holiday growing up.
“All my friends would take off running and I would be tip toeing on and have no idea where I was going, where anyone was and I would hear spooky sounds and think what if something jumps out at me, so it was a very scary holiday for me,” Rachel explained.
All Rachel can do is laugh about it, like she does when telling most of her stories. She says laughter is often what gets her through it.
One time when Rachel was studying abroad she got lost in the dark and needed help finding her dorm room. “I asked a blind woman for directions, saying I couldn’t see. It was insane,” Rachel explained as she chuckled at herself.
“If I laugh at it than I can’t be afraid of it,” Rachel expressed. “Everyone has something they are dealing with. And I don’t want pity, I don’t want you to laugh at me, I want your understanding and I want you to laugh WITH me.”
Although Rachel does her best to stay positive, it’s not always easy. She has her moments and sometimes they are awkward.
“Going out is stressful. I joke about it, restaurants and bars, it’s really funny when I trip over chairs but, I don’t want to always be the clown and I want to be able to handle myself,” she explained.
As Rachel’s vision wanes, she has reluctantly made necessary changes. She stopped driving about five years ago, and while Rachel may feel like she is losing some of her independence, she is not losing her sense of humor or her hope.
Human clinical testing is underway to find a cure for Retinitis Pigmentosa, and for Rachel it’s not IF but WHEN. Here is the great news, retinal research is moving along at an incredible pace. Just a decade ago, a few therapies were in clinical trials. Today, there are dozens of drugs, gene therapies and stem cell treatments that are being tested on humans. Some of them are actually restoring vision to people who are blind.
Rachel and her mom are both closely involved with the Foundation for Fighting Blindness. There are chapters in Northern Virginia and Montgomery County.