Tag: Retinitis Pigmentosa

The Benefits of Staying Active in The Face of Adversity as Told By 16 Disabled Athletes

In the month leading up to the kick-off of the 2024 Paralympics in Paris, Navigating Blindness featured sixteen blind and low-vision athletes. These athletes shared their adventures and their thoughts about why it’s so important to give disabled children the opportunity to participate in a wide range of activities. Below you will meet the participants and read about how staying active helped them overcome adversity.

Kai Owens (Instagram)

Our very own Kai Owens who lost his sight at the age of ten to ABCA4 retinopathy and autoimmune retinopathy shared a short video of himself skimboarding at our local beach. For him, watersports relieves anxiety and helps him feel included with a great group of ‘beach’ friends he grew up with. (You can watch him skim by clicking here.)

Kai also shared three videos of himself from a brothers’ trip to the Oregon Coast. In one video, he is seen crossing a stream on a large fallen log by navigating with his white cane. (Click here to watch.) In another video, he’s carefully navigating across a beach filled with boulders. (Click here to watch.) In the last video, Cash and Kai are at the summit of God’s Thumb formation. When we asked if it was scary Kai said, “Yes, but the fresh air, elevation changes, sounds of the wind and waves, and being with Cash was great! I crushed it!” (Click here to watch.)

Early on our family discovered that brothers’ trips were a great way for the boys to bond while doing activities they love. Their first brothers’ trip was to Erik Weihenmayer’s NYC Summit! Speaking of Erik, we featured him, too!

Erik Weihenmayer (Instagram)

Erik Weihenmayer’s blindness was caused by juvenile retinoschisis, which affected his vision from birth and eventually caused him to go completely blind by his early teens.

Continue reading “The Benefits of Staying Active in The Face of Adversity as Told By 16 Disabled Athletes” →

Diagnosis of Autoimmune Retinopathy: Becky’s Story, Part 2

Hello, again. It is Becky Jayakumar and part one of my autoimmune retinopathy (AIR) diagnosis is available here. Since AIR is a challenging disease to diagnose and manage, there have been some bumps in the road since my last post. Almost immediately after the previous post was published, my third CT scan of the chest showed 3 masses in my right lower lung, which were multiplying (originally one mass earlier in the year) and increasing in size. This prompted my doctor to re-evaluate my PET scan (tests for active cancer) from earlier in the year. While the lung spots did not show activity, they did notice that my thymus was active on PET scan and subsequently, I was referred to an oncologist. Ironically, my oncologist canceled the appointment as I was not yet diagnosed with cancer despite the rationale for the referral was that a biopsy was physiologically impossible. Through connections and asking favors, I got the oncologist to see me later that day.

At this appointment, she was gruff to say the least as I am sure she was mad that I pulled strings to be seen by her. She told me that I would eventually have cancer due to my autoimmune conditions to which I responded “but the question is do I have it now?” She finally looked at my imaging and stated I needed surgery immediately. She referred me to a local cardiothoracic surgeon. To spare some details, I ended up canceling my surgery with this surgeon as I was not comfortable with him (there are only about 100 of these surgeries per year in the US) and received a referral to Mayo Clinic to their thymoma group who scheduled the surgery for a few weeks later.

Luckily, the lung lesions were not cancer and were actually due to my liver migrating up through three diaphragm perforations. Hence during the surgery, they reconstructed my diaphragm and removed my thymus from my heart, aorta, and lungs. There was significant hope from my doctors that the removal of the tumor would halt the progression of my vision loss. Of note, thymomas are notorious for causing another paraneoplastic disorder and removal is often curative. Unfortunately, my vision loss significantly worsened post surgery then eventually a few months later returned to a more similar progression to prior to surgery.

Continue reading “Diagnosis of Autoimmune Retinopathy: Becky’s Story, Part 2” →

Diagnosis of Autoimmune Retinopathy: Becky’s Story

As you may know, our son Kai was recently diagnosed with Autoimmune Retinopathy. When we received the new diagnosis we were shocked and we are still adapting to the news. Thankfully, we had already built a strong network through this blog and our social media presence. We reached out to our community and thanks to your shares, our post was viewed more than 8,000 times.  Autoimmune Retinopathy (AIR) is extremely rare, but with your help, we were able to connect with 12 people who are navigating AIR and were pointed to a FB Community for Autoimmune Retinopathy with 166 members (#Rare). Becky is one of the people who immediately responded to our pleas for help with an abundance of support and information. I am honored she agreed to share her story here. Thank you Becky.

Guest post by Becky Jayakumar

Hello, I am Becky Jayakumar and I was recently diagnosed with autoimmune retinopathy (AIR).  AIR is a rare autoimmune disease that destroys the retinal cells of the eye leading to progressive vision loss.  There are different causes of AIR, no set diagnostic criteria, and no standard treatment which makes it a challenging disease to manage.

A year ago, I suddenly experienced visual changes and lost part of my left peripheral vision.  Nothing seemed to cause it, nor did anything make it better. That evening, I was hospitalized overnight for an eye ultrasound, brain imaging, and labs and ultimately, these exams came back normal.

Over the next few months, my vision continued to worsen with progressive peripheral vision loss and increasing visual disturbances.  During this time, I had more testing than you can imagine with many potential diagnoses which typically eventually got ruled out.  My abnormalities included an enlarged blind spot on the left and a slightly reduced thickness of my left optic nerve.  My local retinologist and neuro-ophthalmologist weren’t able to do the additional testing to look at function of the eye in NV, so I was referred to Mayo Clinic. Continue reading “Diagnosis of Autoimmune Retinopathy: Becky’s Story” →

The Courage to Share: 11 Blogs About Living with Sight Loss

Kai & I are very excited to share these eleven blogs that are written by individuals who are living with sight loss.

The bloggers have different diagnoses, and their philosophies, cultures, and religious backgrounds vary, but what they all have in common is the courage to share. They are organized by year of diagnosis. Continue reading “The Courage to Share: 11 Blogs About Living with Sight Loss” →

A Journey Back To 2014: What We’ve Learned About Advocacy

While sheltering-in-place I’ve had the opportunity to read through some of my old journals written when Kai was first diagnosed and I’d love to share one with you.  I’m struck by major developments in my thinking and beliefs, so I will make some comments from my 2020 self, at the end of this post that I wrote in 2014.

Originally Written by Kim Owens & Published on Caring Bridge (7.14.14)

What a week we’ve had! Our trip from rural, coastal GA to DC was AMAZING! Thanks to our Congressman John Barrow and his wonderful staff the trip was filled with surprises beyond our wildest dreams! Continue reading “A Journey Back To 2014: What We’ve Learned About Advocacy” →

A Step Forward & Other Hijinks!

Below is a link to an episode of one of my favorite podcasts called A Step Forward by Kassy Maloney. In this episode, Kassy hosts a panel of 4 adults who are blind or low-vision and encourages them to share openly about their Orientation and Mobility skills and history.  I could relate to so many of the stories shared and the episode sparked memories of one of Kai’s epic hijinks.

No Fear Kai

One lazy Saturday, there was a knock at my door. I opened the door to find an intimidating, bulky, 6’4″ tall police officer.  I could tell by the look on his face that something was wrong.  It turns out that he had just had an altercation with Kai and his friends. They were all 12-14 at the time, and up at the school playground. This is a regular occurrence in our small town — kids meet up at the school to play on the playground, ride scooters and skateboards. However, on this particular day, one of Kai’s friends pointed out that there was a built-in metal ladder to the roof which hung about 6 feet from the ground. The boys thought it would be a good idea to climb up and check out the roof (and post IG pics from the tip-top! what!?)  A passer-by called the police saying that there were 3 kids on the roof and one was wearing a neon yellow jersey.

Continue reading “A Step Forward & Other Hijinks!” →

Legally Blind Teen Shares Comfort Items while Encouraging Peers to Step Outside Their Comfort Zones.

When Kai was 10 and first diagnosed with degenerative sight loss, he was scared. He began to have trouble seeing at night and his first reaction was to build a nest on his bed out of blankets and pillows. One night as mom was tucking him into his nest, he said that he felt bad for all the kids around the world who do not have comfortable places to sleep. Mom had no idea how to tackle that issue on a global scale while also helping her son deal with sight loss, but after many conversations together: Kai’s Comforts was born.  Kai decided to collect new, soft, highly tactile pillows and blankets from his community to deliver to his peers who are living at schools for the blind. At first, it started out as a great way for us to do something positive, and connect Kai to peers dealing with sight loss. His first collection was delivered to kids at the Georgia Academy for the Blind. A school for children who are blind and visually impaired about 3 hours from Kai’s mainstream school. The first delivery was a huge success the kids were thrilled to receive their comfort items, and Kai got to meet lots of kids who were “like him.”

Kai is 17 now, and he’s just completed his 4th delivery. This year, in addition to delivering comfort, he had a message to share: Comfort is important, but he now believes it’s even more important to push himself outside of his comfort zone. Continue reading “Legally Blind Teen Shares Comfort Items while Encouraging Peers to Step Outside Their Comfort Zones.” →

See, Strechay & Momoa

Hi everyone!  This post was written by our boys — Kai who is 17 and legally blind and Cash who is 21 and typically sighted — about their recent travel to Canada to visit the set of the Apple TV+ original See! That’s right, they even got to meet Jason Momoa and watch a fight scene in a cave, as it was being filmed. (Season 1, Episode 6 – which aired this past weekend.) The post is wrapped up with comments from both dad and mom. Enjoy!

From Kai’s Perspective:

My brother Cash and I’s trip to Canada taught me so much and it was a great experience. We traveled to Vancouver to meet my mentor Joe Strechay, who is the blindness consultant on a new Apple+ TV show called See. Joe is an awesome guy who has helped me learn how to thrive with a visual impairment, so I was super excited about the trip. Continue reading “See, Strechay & Momoa” →