Beacon Stories

Feb 22, 2021

Managing Your Mindset, Embracing Your Voice

Charity’s recent rapid decline in vision due to RP and her daughter’s diagnosis with RP has caused her to open up about her vision loss journey. After getting involved with the Foundation, Charity now feels like she has a voice to help others in the visually impaired community.

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Charity Kohlberg was diagnosed with retinitis pigmentosa (RP) when she was eight years old. At the time, she didn’t notice any problems with her vision except some trouble with her night vision. Neither Charity’s brother nor sister are affected, but her mom also has RP, although she’s never been very open to talking about it.

After the birth of her first-born, Charity started to notice a slight progression in her vision loss. Now, at 36 years old, Charity lives in St. Louis, Missouri, with her husband, Kyle, and their two children, 15-year-old Kayden and 10-year-old Kylie. In just the last four years, Charity’s peripheral vision has declined rapidly.

Charity and Kylie

Charity and her daughter Kylie.

In November 2020, Charity took Kayden and Kylie to the eye doctor for their yearly check-ups. Charity recalls her “mother’s intuition” kicking in because she knew something was going on with Kylie’s eyes. And sure enough, the doctor said that Kylie’s eyes were showing signs of RP. Kylie was then referred to a pediatric ophthalmologist, who confirmed her diagnosis.

“I felt so many different emotions finding out Kylie has RP,” says Charity. “I honestly just felt like a terrible mother because I was the one that had given it to her.”

But despite Charity’s worries about Kylie, the pediatric ophthalmologist was extremely optimistic and explained confidently that Kylie’s generation will have treatments and cures in their future.

“He assured my husband and me that as much as research is progressing now, that Kylie will be just fine,” recalls Charity. “He just wanted Kylie to know that she doesn’t have anything to worry about right now, and she can continue in her life just as she does now.”

Kylie loves softball and plays catcher, just like her dad had when he was younger, so Charity was relieved that Kylie could continue doing what she loves. And even at such a young age, Charity feels like she can discuss their condition at a high level, and Kylie understands.

It has only been in the last year that Charity has started to open up about her vision loss, after not sharing very much about it with family and friends for so long. Charity now uses Facebook as an outlet to share her journey with RP.

So, after Kylie was first diagnosed, she decided the two of them would post a video on Facebook discussing what they’ve been feeling and going through together. After sharing their recent experiences, Charity received an immense amount of support and positive feedback.

Charity and her husband Kyle

Charity and her husband Kyle at the St. Louis Dining in the Dark fundraiser.

“My close friends knew I had RP, but I hadn’t been transparent about what I was really going through before,” says Charity. “But after getting involved with the Foundation, I realized my story needed to be heard.”

Charity first got involved with the Foundation Fighting Blindness volunteering for the St. Louis Dining in the Dark fundraiser in early 2020.

“It was the first time I met others who were visually impaired, and I didn’t have to explain anything, they just got it,” says Charity. “It’s so peaceful to go somewhere and have others understand what I go through on a day-to-day basis.”

Charity also participated in this year’s National Virtual VisionWalk for the first time.

“I’ve struggled to explain to other people that with RP, every single day, my vision is different,” says Charity. “I’ve heard many people make jokes about blindness, and it really makes you get thick skin quick. I’ve honestly battled with depression and severe anxiety because of it.”

Charity sees a counselor and a psychologist to help her cope with depression and anxiety and advocates for both, as they’ve been incredible resources in changing her mindset on her vision loss journey.

“Something so simple like going to the grocery store isn’t easy for me anymore like it used to be and can bring me so much anxiety,” says Charity. “By the time I leave, I’m so overwhelmed, but thankfully my support system of mental health providers have helped me to manage with these day-to-day adjustments.”

Charity also uses and recommends journaling as a way to express any frustrations. Walking and eating healthy has also helped Charity to feel better, body and mind, each day.

The Kohlberg family

The Kohlberg family, Charity, Kyle, Kayden, and Kylie, in their backyard celebrating the National Virtual VisionWalk.

“There are days I just cry and think, why me?” says Charity. “But now I feel like I have a voice and purpose in life. I want to help others learn how to adapt when your vision loss is unpredictable. You just have to learn to cope with what you have and to ask for help when you need it.”

As Charity’s vision loss continues to progress more rapidly, she often feels scared to do things that she would ordinarily do before. But being a part of the Foundation has helped her step out of her comfort zone and overcome those fears.

“Without the Foundation, I would feel so alone,” says Charity. “But being a part of this community has just fulfilled a part of me that other people can’t. It’s just been so uplifting to have a place to turn where others can really understand and relate.”

Learning about all the ongoing retinal research in the pipeline gives Charity high hopes for finding treatments and cures, but even more motivation for her now is doing all she can for her daughter Kylie.

“I just want to help anyone newly diagnosed know they aren’t alone,” says Charity. “Having RP feels like an ongoing battle for me, but it’s about having the right resources and people to lean on.”