Denise DeJong and Marilyn Steffen are not only identical twins, they also share the condition Retinitis Pigmentosa (RP), a genetic disorder of the eyes causing loss of vision. The two, along with their nearly eleven-month older brother, were diagnosed with the condition several years ago, at the young age of twenty.

Though neither their father nor mother had developed the condition, they were both carriers of the recessive gene. The older three children in the family developed the condition while the two younger sisters did not. Forms of RP vary, depending on how it runs in your family and what part of the spectrum it falls in. The type of RP in this family leaves many people completely blind in their twenties.

Though the degenerative condition has caused their vision to worsen over the years, Denise and Marilyn still have some limited vision. They have less than 10% of their peripheral vision, or vision that lies outside the center of their line of sight, but still have partial center vision. They compare their vision to putting a small funnel in front of your eye. Their vision is a bit clearer as the funnel broadens, though over the years that has become foggier and spotted. They explain that it’s hard to tell if their condition has worsened due to RP or the aging process.

As children, they always felt something was wrong with their vision because of their night blindness. When Denise was tested, and the condition was discovered, the rest of the family was tested as well. That’s when they discovered that three of the children in the family had developed RP. Marilyn explains that it was almost a relief when they were diagnosed as it gave a reason behind their visual impairment. Though they had to give up their driving licenses, which most young adults would struggle with, they found it a relief because driving had become so stressful for them.

Denise recalls begging the doctors at the time of her diagnosis to predict when she would be completely blind. They had predicted that she would have lost all vision by her late twenties, only a few years away. She lived her life at that time thinking that complete blindness was nearing quickly. Fortunately, the condition has progressed more slowly for the twins.

Because their condition affected them very young and progressed gradually, they learned from a young age how to do many things with little vision. They feel fortunate for this, as it gave them time to adapt to it, adapting better than someone who might lose their vision instantly.

Their positive and upbeat attitude has helped them deal with the condition. “We use our sense of humor and we’ve been told that we really have a good attitude, grace and a sense of humor,” Marilyn explains. But she explains that sometimes during a bad day, they might confront insensitivity when someone tells a blind joke or makes a rude comment about their impairment. They both feel that their reaction is most important to the negative situation, reacting with grace or even their sense of humor. The ladies joked about an incidence when one walked out of the house with two different shoes on.

“Even the sighted people do that!” Denise exclaims as we laugh.

Denise adds her perspective. “If we all live long enough, we’re going to get something. As we age, we all change anyway. And there’s so many different things out in the world and so much good stuff that you can find.” She explains that though there are many things that they cannot do, they have found just as many things that they can do. “Every one of us has things that we can’t do that somebody else is better at,” she smiles.

They’ve come to rely on family and friends for help when needed. Marilyn explains how they are thankful that they have friends and family invite them to travel along to events. “It’s a daily thing. You just have to learn to reach out for help. We’re very grateful,” she adds.

Denise adds, “There are days that are really tough. I think one thing I had to learn was to reach out and ask for rides without feeling guilty.”

Both women are thankful for their employers in supporting their limitation. Marilyn started at the federal prison 23 years ago, managing several vending machines under the Business Enterprise Program of South Dakota. Under this program, any federal facility has priority to a blind or visually impaired vendor and the prison fell under this umbrella. Her husband Marv assists with filling and fixing the machines. She explains that she is grateful for the staff at her job at the prison who encouraged her as they’ve always wanted her to succeed. She had great employees working for her and friends that helped with rides and support.

Denise has been with the Avera Sacred Heart Wellness Center for nearly 19 years and is the Senior Exercise Coordinator. She stresses the importance of hiring someone with a disability which can result in a more dedicated worker because they really appreciate the job.

“We need to work, to be productive,” she explains. “That gives people with disabilities a lot of pride in what they can do in giving back, because so many people give to them. Whoever you are, you need to give back to society and do something that’s useful,” she states.

Over the years, they’ve taken advantage of various tools to help aid in their impairment and Denise pointed out that someone with a disability must be proactive in finding services and asking for help. The two have visited the South Dakota School for the Blind in Sioux Falls and the Nebraska School for the Blind in Lincoln, where their brother worked. They learned a lot about traveling with a cane from their brother, who has become extremely skilled at it. They’ve learned how to face various situations completely blinded by wearing a sleep mask, like cooking, traveling and crossing streets.

Though they can maneuver around their homes without difficulty due to their organization and memory of the environment, venturing out becomes more stressful and they often rely on their other senses. Denise explains how often when she’s crossing a street, she’s relies on listening for cars rather than seeing them. Even crossing the street has even become more challenging, though, due to the advanced technology in automobiles. With hybrid cars, for example, their engine quits when they stop, making it much more difficult to listen for them.

There are traveling services available, Marilyn explains, and she has taken advantage of them during her flights to Los Angeles by herself to see their children. She notes that, when booking an airline ticket, you can note that you are visually impaired. “The airlines are great. If you accept the help, they’re great. Wonderful, wonderful people,” she beams.

The two have also taken advantage of the Yankton Transit system, speaking highly of the services that helps those unable to drive with the ability to get around town. Denise explains that a service like this gives someone with a disability pride and independence, which also benefits their care takers.

Denise suggests that, with any disability, there are state services that will help provide tools, training and devices to aid in every-day tasks. These services can be provided in the home and even the work setting.

They mention that, if you see someone with a cane, offer to help them or give them the right of way. “Come up to us. Sometimes I might see you but sometimes not,” Denise explains. They laugh about how, as identical twins, they often get mistaken for the other twin. “Come up to us and identify yourself. Even if you have the wrong twin, it’s ok!”

They’ve found that certain situations might make them motion sick due to a lot of movement in front of them. Denise advises that, when walking with someone who is visually impaired, it’s best to lead and give them your arm or elbow, instead of pushing them forward. And if directing them to reach for something, give them specific description where it is, for example, “the item is located to your right, at 4:00.“

The two are thankful for their friends and family that assist them. They find that sometimes they blend in so well that they must remind others of their limitations. It’s a combined effort and takes teamwork as a family. Though they’ve discovered that there are some people that just can’t accept their disability, there are so many other supportive people who do.

Denise explains how her husband, Keith, is more sensitive than many of her impairment. When he was 27, he was struck by Guillain-Barre, a French version of polio, and became very sick, to the point that they were afraid he wouldn’t survive. During this time being sick, he was blind and couldn’t move, so he is more aware of the challenges she faces. She explains how the caretakers don’t get enough credit. They must deal with the loss too.

The ladies summarize their condition in unison. “It’s a process, not an event.”

Denise adds, “Just like life, it’s a process.” She explains that, just because you have a disability, you must be proactive and responsible for yourself. Ask questions, look for solutions to help you. “When you take charge of and own your disability, and own your life, you make choices for you.”

Having an impairment doesn’t make you a weak individual. It instead does the opposite, as Denise explains. “We grow stronger through our difficulties. We become more of a whole person and live life more.”