Helpless. That’s how I felt growing up and living with Keratoconus…though I didn’t know that’s what I had at the time.
Feeling Helpless with Keratoconus
I grew up in a great part of the country in North Hollywood here in Southern California, but I went to college at San Diego State University. One day while in college, a bunch of buddies and I drove 20 miles south to Pacific Beach to go surfing. That’s where the big waves were…and that’s where I was knocked off my surfboard. In the confusion, I was separated from both my board and my buddies. When my board washed up on shore without me, they were worried…and so was I.
I tried to swim to shore but it took a long while because the currents were strong. When I finally reached the beach, I looked around and couldn’t find any of my friends. In fact, I couldn’t find anything that looked familiar. It was getting dark and cold, and so here I was, lost on a beach, apparently over a half mile from where I started, feeling helpless and looking for any clues about where I was.
I finally found a police officer who was kind enough to point me in the right direction and I was eventually reunited with my friends.
My eyes had let me down yet again. I already knew I was heading off to Optometry School the following year, and so I resolved to find an answer to what was wrong with me.
Growing Up With Keratoconus
I had spent my high school and college years with bad vision, never knowing what was wrong with my eyes. I was a shy boy for as long as I could remember, and would prefer to sit in the back of the room, where I could remain mostly anonymous. But my poor vision forced me to sit in the front of the class so I could see the chalkboard. I was uncomfortable there.
To make matters worse, back in those days there were very few stylish glasses. The only choice was a pair of ugly and thick black frames. I couldn’t see well without glasses, but I couldn’t see well with them, either. Soft lenses were new, and not much better, at least not for me. That’s one of the things about Keratoconus in those days…you just couldn’t get a good prescription to see clearly…or anywhere close.
I lived off campus, and for me, driving was difficult, especially at night.
How I Discovered I Had Keratoconus
Optometry school started out much the same as college, and it continued to be difficult for me to read what was written on the board or overhead projector screen no matter how close to the front of the class I sat. Fortunately, my classmates decided that we’d start taking group notes, which meant that one person would be assigned to take notes for the class each day. That was great for me, because I could depend on getting a copy of some well written notes…unless it was my day to take the notes.
No one got good notes on the days that I took notes.
In my second year, we began diagnosing each other’s eyes. We were paired off, taking turns being the patient and the doctor. And much like people dreaded when it was my day to take notes, they also dreaded each time they were paired with me. No one could figure out what was wrong with my eyes. Diagnosing my eyes was like trying to do a jigsaw puzzle made of cut crystal. It was just impossible. So when it came time to choose partners, it brought back memories of elementary and middle schools, being picked last for a sports team.
That year, our contact lens course was taught by Dr. Brungardt, a pioneer in designing contact lenses. He was a tough, grisled cowboy of a doctor, but there was no one smarter than he was when it came to complex vision issues and contact lenses. He’d seen it all. When he heard that no one wanted to be paired up with me, he paired himself with me and took a look at my eyes. When he was done examining me, with his lit cigarette dangling from his lips, and squinting through the smoke, he yelled out to the class, “Hey you idiots. Leonard’s Got Keratoconus.”
None of us in the class had ever heard of Keratoconus before, and so we really didn’t know what he was talking about. But because there was finally a name for what was wrong with me, I studied eagerly under Dr. Brungardt and tried to learn everything there was to know about Keratoconus…not only about diagnosing Keratoconus, but about designing and fitting contact lenses for Keratoconus, too.
My First Keratoconus Contact Lenses: “Wow! Leaves On Trees!”
Back then, treating Keratoconus was much different than it is now. We struggled to use the instruments we had to diagnose Keratoconus as best we could. And once diagnosed, we did what we could to manually design and then make contact lenses to help make the patient see. We had little lathes and other machines to actually grind our own Rigid Gas Permeable (RGP) contact lenses. With Dr. Brungardt’s help, we finally made a lens that helped me see.
I remember saying “Wow! Leaves on Trees!” Before that, for me a tree was a blob of green on a big brown stick, but now I could see the actual leaves, and it was miraculous.
I got so good at diagnosing and treating Keratoconus, Dr. Brungardt had me help teach the classes both below and above my year about the corneal disorder. And other people came from all over California to be examined by me, even though I was still in Optometry school. Having accomplished my goal of figuring out what was wrong with me, I then set a new goal, and became passionate about dedicating my life to helping other people living with Keratoconus — people like me — to see clearly.
After graduating from Optometry School, I got a lot of experience fitting hard contact lenses, and sometimes piggy-back lenses (a hard contact placed over a soft contact lens). Lens manufacturers would begin to develop contact lenses specially made for Keratoconus. Every new development led to better vision and greater comfort for my Keratoconus patients…and me too.
Living With Old-Style Keratoconus Contact Lenses
But as much as the lenses helped me see, I could not wear the lenses for very long. The lenses were VERY uncomfortable and I had to pick and choose when to wear them. So when I went to bed or wanted to relax, I would take the lenses out, but then if I wanted to watch TV or read, I would have to sit close to the screen or hold the book up to my nose.
I would get up in the morning and delay putting in my lenses, so I ate breakfast and read the newspaper while wearing my glasses and holding the paper close. I would then put in my lenses for driving to work and for the first half of my work day.
By mid-day my eyes would be red and irritated, so I would use eye drops to soothe my eyes and take Tylenol for the pain and discomfort. I’d take them out during lunch to give my aching eyes a break. And when lunch ended, I’d put them back in.
Like many Keratoconus contact lens wearers, I had to choose when I wanted to see well, and when I had to settle for poor vision and greater eye comfort.
Sometimes, I would wear a lens in one eye and depend on that eye exclusively, then switch mid-day to a lens in the other eye. Needless to say, this wasn’t ideal.
And if my day extended into the evening, I would either have to suffer with poor vision with glasses, or the pain and discomfort of wearing ill-fitting contact lenses. I can remember many dates when I had to bring my contact lens cases and solutions with me in case the lenses got too uncomfortable or the evening ran long.
And if I got the smallest bit of dust or debris in them, the pain would be terrible. As a result, I avoided a lot of the fun activities my friends were doing, like going to sports events, horseback riding, hiking…almost anything outdoors. I just couldn’t risk it.
Not only was it painful and annoying, but it was embarrassing, too.
There are still Keratoconus Patients today who were fitted with conventional contact lenses or by doctors not sufficiently trained in Diagnosing Keratoconus who have the same issues: Redness, dry eyes, eye pain, discomfort, poor vision, choosing when they want to see well, managing their eyesight minute by minute, and the distractions and embarrassment of having to deal with all of this.
Living With Keratoconus In 2021
Living with Keratoconus today is much different than it was in the 80’s, 90’s and even the last few years. There have been huge advancements in Keratoconus diagnosis and treatment here at the California Keratoconus Center and elsewhere around the country. Today, I can wear my Keratoconus Contact Lenses all day long, from shortly after I get up in the morning until shortly before bedtime.
I can also wear them during every kind of activity. Many of my patients and friends know that I am a Triathlete, and I wear my Keratoconus contact lenses while running, biking and swimming. I have many patients who play baseball, soccer, tennis and other sports who wear their lenses during those activities, too.
My favorite activity is simply staring at my wife, children and grandchildren. I can’t imagine my life without being able to see every detail of their faces.
Driving With Keratoconus
Driving with Keratoconus has historically been a big deal because Keratoconus can often cause painful and dangerous glare, halos, streaks and other aberrations while driving, especially at night. Many of our new patients depend on friends or relatives to drive them to my office because they are scared or unable to drive on their own.
I remember a couple of brothers from Oxnard: The older one was coming to be treated by me for his Keratoconus and his younger brother drove him because the older brother was afraid to drive. Some time after the older brother was fitted with his new Scleral Lenses, the younger brother came into my office and said “Doc, you GOTTA come outside!” I followed him outside and there was my patient behind the wheel of his new Canary-Yellow Corvette, with his smile brighter than the sun reflecting off the paint of his car. He was never able to drive before then, but since he began wearing the contact lenses I designed for him, he was finally able to see the road and traffic, and feel confident enough to drive safely.
Surgical vs Non-Surgical Keratoconus Treatment
Beginning about 20 years ago, a popular method for treating Keratoconus was the insertion of two semi-circular plastic rings in the Cornea, called Intacs™. This surgical procedure is still done by some doctors today, and comes with the risks of most other surgeries, including potential complications, time to heal, risks of infection and more.
Fewer doctors still use Intacs to treat Keratoconus, probably because the patients very often still need to wear contact lenses to see well. I’ve seen many patients with Intacs, and although we can treat them, it is far more difficult than if they hadn’t had the surgery in the first place.
At the California Keratoconus Center, we focus on non-surgical Keratoconus Treatments. Our advanced technology for diagnosing and treating Keratoconus, including the Eaglet Eye Surface Profiler, the Nidek OPD III, and the Zeiss OCT are used together to…
- Map over 350,000 points on your eye so we can see your Keratoconus with precision
- Track the path of light through all the different parts of your eye, so we can “see” the glare, starbursts, halos and ghosting that you see
- Design your contact lenses to help you see clearly
- And then to measure the fit of the lenses on your eye to within a few microns.
All of this technology is part of my cKlear Method™ for treating Keratoconus. It’s the method I use on my own eyes, and it’s what makes my Keratoconus weep with joy when they can see clearly for the first time in years…or ever.
For me, Living with Keratoconus has changed drastically over the last 40 years. From grinding my own hard contact lenses that I could only wear for a couple of hours at a time, to the Scleral Contact Lenses I wear today, which are so comfortable I can wear them all day, we’ve come a long way.
I’ve changed from feeling helpless with my Keratoconus to being helpful to so many others who have Keratoconus. I feel blessed I’ve been able to help so many of my fellow Keratoconus patients the way I have. I’d like to help you, too.
What Is Your Story About Living With Keratoconus?
If any part of my story resonates with you, please reach out and let me know. There’s probably a way for me to help you the way I’ve helped thousands of other Keratoconus patients. Make an appointment online or call my office at the California Keratoconus Center at 818-891-6711. Maybe just a few weeks from now, you’ll be seeing clearly, too.
