Blog Championing personal stories to help empower the disability community

We caught up with Lance Johnson, a podcaster and video editor, living with autosomal dominant retinitis pigmentosa (adRP). Since moving to New York City, Lance has started the See-Through Podcast, championing people from across the disability community.

A headshot of Lance smiling and looking directly into the camera

The See-Through Podcast creates transparency on modern life with a disability through the broadcast of raw conversations with the disability community. Giving a platform for empowerment and bridging the sometimes-siloed patient communities. Guests on the podcast feature professionals who are shaping the future of the disability community, as well as various artists, athletes, influencers, comedians, researchers, scientists, technologists, and human rights activists.

We're all in this together and we all have accessibility issues

Lance Johnson

We learned about you through your podcast. Why did you start your podcast?

“I moved New York from North Carolina in 2017. I was working for a software company on their internal video team. I am a video editor here in New York. When I quit that job, I had to tell my employer why I was moving to New York. And the reason for moving was because I wanted to use public transportation, because I have an eye disease called retinitis pigmentosa (RP) which affects my peripheral vision and ability to see in the dark.

I was getting to the point in North Carolina where I did not feel comfortable driving anymore. I was always anxious about, you know, getting in an accident or potentially seriously hurting someone in a car accident. So, I decided to move to New York to take advantage of public transportation and of lots of video industry work here.

When I told my employer I was leaving, I had to explain why. It was the first time I was ever open about RP. I had always hidden it. I would go to job interviews and I would never bring it up. I work jobs and just try to hide it. However, it got to a point, with my RP where I could not hide it anymore. Where I would trip over things a lot. I would miss handshakes, visual cues that I should catch in my peripheral vision. Basically, my time was running out of hiding it. I had to be open about it finally.  

Being open about my condition made me feel surprisingly good. I told my employer, and as soon as people knew about it, it was not as scary as I had imagined.

Knowing that when I moved to New York I wanted to start a podcast. To listen to other people’s personal stories and begin to showcase that you do not need to be scared. You should be empowered by your condition, or at least the knowledge of it. Hiding it made things worse. The podcast is my favorite creative project. If the podcast can help one person feel more empowered about any condition or any situation they might be in, that would make it all worth it.”

How did you first find out that you had retinitis pigmentosa?

“I was clinically diagnosed when I was 12 years old. My mom has RP, so it was on my eye doctor’s radar to look a little more in depth into my vision as I was growing up. They caught something so I went to a specialist. At the time I was living in North Carolina, and I would go to see the specialist in University of North Carolina (UNC) Chapel Hill. No genetic testing was done at that time, they just wanted to confirm I had RP.

Knowing I had RP at that age I got to see firsthand how my mom’s vision was declining. It was an insight into my future which presented this kind of gloomy overhead cloud over me. It would stress me out and that’s probably why I was in denial for so long because it was an anxiety inducing kind of thought.”

Lance Johnson behind his desk, podcasting

You did a podcast with your genetics counsellor and your genetic test results? Why did you get genetic testing and did the results help you?

“Once I had my RP diagnosis, the specialist center wanted me to go every year for a checkup. So I did that every year. I go to see the specialist and eventually, as I got to a certain age, they pitched genetic testing to me. The center suggested I get the testing done and my initial reaction was that I had never even heard of it before. The center explained that they were going to do the testing and then set me up with a genetic counselor. I did not really react well to that. As I thought that I did not need to talk to a counselor about any of this. I kind of misinterpreted what the service was.

However, I did get the genetic testing done in 2016. I was 26. Once I got my results back, I just didn’t open them. Something was blocking me opening the results and discussing them. Following me, my mom and sister also had their tests done. Through the three of us getting tested, the genetic center looked for similarities in our genetics, allowing the center to pinpoint a SNRPN200 gene mutation that causes our RP.

Putting off knowing was not smart. I had this denialism towards the fact. My feeling was, if they had found something, they would let me know.”

Would you recommend people to get tested?

“Yes 100%”

To learn more about genetic testing, please check out our podcast ProQR Talks episode #3 - Empowering the IRD community with knowledge of their genetic diagnosis and visit our dedicated page for genetic testing.

What do you expect from a treatment?

“I expect a treatment that at the very least plateaus my vision loss. I have lost quite a bit of vision, but if I could keep what I currently have I would be happy.

I hope the treatment is affordable and is not a treatment that involves a ton of steps and procedures. I also expect to not have to travel overseas to get the treatment.”

Did you research your condition or developments in the space? Where did you get the information?

“With RP being in my family I was able to see what it was firsthand from my mom. However, I did not know the specifics of RP until recently. I still do not truly know every detail, but the information I do know is straight from the most accessible source on the planet: google. I still only know the basics just so I can explain it to other people.

Knowing every detail is not really that helpful in the physical sense because it does not change anything, however it can help ease some anxiety about what you're experiencing. For example, RP has some odd symptoms like floaters, vertigo, light sensitivity, and tired eyes. It is best to know the precautionary measures you can take to prevent RP from progressing at an abnormal pace.

Apart from my own google research, I have been to a few Foundation Fighting Blindness events and have talked with various people with varying degrees of RP. My genetic counselor also provided me with information on the hereditary features of RP.”

What are your ambitions for the future?

“As of now, I am a freelance Video Editor in NYC. This career choice requires visual acuity and attention to detail, so I am hoping to be able to work in this field for as long as possible and work on nationally recognized projects. Alongside this, I want my podcast to grow into something that has a large audience and could potentially be my main source of income.

More importantly, I want my podcast to positively impact people and create more unity within the disability community. I am a creative and I would love to keep working in a creative field: filmmaking, podcast, music production.

I also just got married in December 2020, which I can't leave out. I want to be as independent as possible. I know I will have to rely on my wife for various things if my vision loss progresses more than I expect. However, I plan to get well-trained in using a white cane and screen readers. To allow me to do as much as I can on my own.

Finally, I'm hoping a slick looking self-driving Tesla will be in my future with a very cute and cuddly guide dog in the passenger seat.”

What do you want researchers and drug developers to know?

“I am thankful that researchers are focusing on therapies for these rare diseases effecting small patient populations. But like most of the population, I am keen to see the treatments and medicine prescriptions to be affordable for all Americans.”

The See-Through Podcast

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