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”

Thriving Blind & Navigating Blindness: Acceptance & So Much More

From perceptions to prom to college — and everything in between — Kristin & Kim cover multiple topics about raising kids who are blind. Click here or on the image below to listen in on the chat/rant that follows no outline or schedule!

Please give us a like, share, follow or comment. Related links are included at the end of the post.

ps. This is my first video experience so please be kind. Yes, I know I blinked A LOT! lol. — Kim

Image is a link to the video along with headshots of Kristin & Kim.

Continue reading “Thriving Blind & Navigating Blindness: Acceptance & So Much More”

Thriving Blind’s Interview with Kai Owens

Check out this fun and informative interview between Thriving Blind’s Kristin Smedley and Navigating Blindness’ very own Kai Owens! They talk skim boarding, surfing, drumming, main stream schooling, college plans and much more. Kai shares a lot about what it takes to be thriving blind!

Click this link to launch the video on YouTube.

 

Image of a screen capture from the YouTube interview with Kai Owens. Image shows both Kai and Kristin Smedley, they are laughing.
Thank you for your continued support. And please leave a comment letting us know about your journey with site loss.

Is Your Child Thriving In The Midst Of Vision Loss? Is Your Loved-One Succeeding Without Sight?

Seven years ago a pediatric ophthalmologist called me at work to say that our 10-year-old son’s retinas were deteriorating. I was so stricken and confused by the words he used – deterioration, progressive, no cure, no treatment – that before we hung up I asked him, “Are you telling me that he’s dying or going blind?” “Blind,” he replied.

The way the news was delivered was so shocking that the memory still brings a visceral pang of grief. With one quick phone call, our lives were changed. We learned that our precious, youngest son, Kai, would go blind. The life we had envisioned for our bright, active child would be dimmed by blindness. We were shattered. We had no template and no understanding of what it meant to live without sight. We had never even met a person who was blind.

Unfortunately, for the first several years our family had to go it alone. We live in a small rural area 3-hours from the nearest blindness advocacy group. Kai was the first child in our county to experience progressive vision loss. We had to chart our own path, figure out our options and make the necessary connections to obtain services for our son.

It’s been 7 years now and we’ve overcome so much. Our son is thriving because of a few very important factors which are highlighted in Kristin Smedley’s new book Thriving Blind.

“If there’s a book that you want to read, but it hasn’t been written yet,
then you must write it.” ― Toni Morrison

Thank goodness Kristin took Toni Morrison’s wisdom to heart and wrote Thriving Blind! Oh, how I wish that our doctor had sat us down and explained what to expect and that our son could still have a wonderful, rich, fulfilling life. Oh, how I wish our doctor had handed us a copy of Kristin’s book which introduces her two sons who were each diagnosed with blindness at 4-months of age. Continue reading “Is Your Child Thriving In The Midst Of Vision Loss? Is Your Loved-One Succeeding Without Sight?”

Kai’s RP Diagnosis Story

When Kai was 4 he had a concussion. We took him to the ER and they did a CT scan. We were told to watch him and he was sent home. He recovered right on schedule.

When Kai was 5 my dad came for a 2-week visit. Our home is small, so having one extra person makes a big difference in our routines — changes in rooms, changes in schedules. Kai began having anxiety during this visit. He had a really hard time with “things being different.”  This anxious behavior continued for a while after the visit but calmed back down eventually.

When Kai was 6 he was on a basketball team. We noticed that when he played he would press and pull on his eyes.  It was worse during the games, but the behavior continued. Some days Kai would actually have what appeared to be bruising at the outside edges of his eyes. And sometimes when he was really tired, I’d notice that his eyes would sort of shoot off to the side repeatedly. We took him to the doctor and were told it was probably allergies and a different manifestation of his anxiety.  (We now know this behavior is called the oculo-digital sign, characterized by poking, rubbing, and/or pressing of the eyes and is very common in visually impaired children.)  Continue reading “Kai’s RP Diagnosis Story”