Keratoconus is extremely rare where I live and people have no idea what it is

Growing up I was told I had a lazy right eye. At age 4, I had surgery to correct a squint and went through what felt like forever having my good eye patched up and having to go around unable to see a foot in front of me.

I had always known the vision in my right eye was never great and never knew any better. I went through years of wearing glasses, and going to checkups at the opticians. However when I was about 18, things started to change. I noticed my eye sight in my "good" eye was getting worse and I was struggling to read things on the TV. I couldn't even read the top line on the chart with my right eye.

Keratoconus?! in my mind I still had that 20/20 vision I always felt proud of.

I am currently 29 years old. As a child I would be pretty healthy, I always felt proud because in a health exam I was told I had a 20/20 vision. To me everything would seem normal and I didn't know that by age 23 my vision would start to degrade. It was during a regular check up that I was asked if I had never used glasses. I couldn't understand that question, in my mind I still had that 20/20 vision I always felt proud of. I was convinced into seeing a specialist who would later mention to me for the first time the word keratoconus.

My Fellow Keratoconus Warriors: Stay Strong, You Are Not Alone.

I have worn glasses since high school, so annual visits to the ophthalmologist and optometrist were the rule. However, due to a job that sent me away from my hometown I hadn’t gone to the eye doctor in almost two years.

This time I needed to go, my prescription was not enough anymore and the letters were getting blurry. Eye prescriptions evolve and I was a few days from turning 27, it was normal right?

What 6 Years of Keratoconus Has Done To Me

I am a massage therapist. One day, I was visiting patients at a factory and happened to play around with the eye chart on the wall. I couldn't believe how much worse the vision in my right eye was than my left.

Later that week I visited my eye doctor. He put lens after lens in front of me, but it didn't really improve my vision. Then he brought me to another room, Did some more tests and told me I had Keratoconus. He explained to me that we would have to try contacts instead of glasses.

We wish you a very happy 2017

From your friends here at the Keratoconus Group, we wish you all a very happy, healthy, and prosperous 2017. We hope your keratoconus journey always be easy, and your problems be few and easy to overcome.

We would like to thank everyone who joined us in helping other patients by sharing their keratoconus experiences. Also, we wish to thank everyone who have read our articles in 2016 and encouraged us by posting comments and sharing our posts.

Thank you all for helping us to spread keratoconus awareness.

To All Who Have Keratoconus: You Are a Warrior!

On November 16, 2015—a week and a half before my 21st birthday—I was a nervous wreck sitting in the waiting room for my annual eye check up. I knew there was something wrong with my vision even before I made the appointment so I already expected something... When my name was finally called my steps were shaky, but confident. I was ready to take on whatever the doctor would find.

And when I was seated and told to read the famous Snellen Eye Chart in front of me with just my right eye I felt something in me shake, something foreboding. I told my doctor I couldn't see anything. All the letters were blurry. But when I tried seeing it with my left eye I could see the letters. With a look of contemplation on her face, she started testing my vision some more and finally with the utmost care and compassion, my optometrist said "I think you have something called Keratoconus."

When keratoconus changes your life plans

Diego during Corneal Collagen Crosslinking (CXL) procedure for Keratoconus

I had my whole life planned out. I enlisted in the ARMY. I was going to be there for 20 years then retire at the age of 38. Then I was going to teach ROTC at my old high school. Sadly my plans were derailed at the young age of 17; by a medical condition called Keratoconus.

Since I can remember I always needed glasses I always assumed it was from all the video games I was playing and how close I was to the television, but I never knew how severe my medical condition was. It was about two or three days after by seventeenth birthday that an Army recruiter contacted me regarding if I wanted to join the Army. I never thought about joining the military but long story short I went to take my physical test and my ASVAB test and I passed them both.

23 Years with Keratoconus and Counting

23 Years with Kerataconus and Counting

The Keratoconus Group has been both a source of information and hope for me since I found it about a year ago. It is helpful to hear others' stories and experiences and know that others can relate to what I've been through.

I'm 44 years old and my life with keratoconus began when I was 17. I had worn glasses from the time I was in grade school, but I remember going to the eye doctor and having him tell me that I might be starting to develop a more complex eye condition. It was when I was 21 that I was actually diagnosed with keratoconus and told that I needed to wear rigid contact lenses to be able to correct my vision.

Famous People with Keratoconus

Here is a list of famous people who have keratoconus:

Mandy Patinkin

Patinkin 2008 (PD)
Mandy Patinkin, American actor and comedian, also has keratoconus.

Just like many of us, Patinkin panicked once he discovered he has keratoconus, and his first question was "Am I going blind?".

Following his doctor's advice, Patinkin wore hard contacts for 15 years and had his eyes checked every 6 months. he had two corneal transplants on his right and left corneas, in 1997 and 1998, respectively.

Bill Cosby

Cosby 1969 (PD)
In July 2016 it was reported that Bill Cosby, American stand-up comedian, actor, and author, is now "legally and functionally blind" because of keratoconus. Cosby has claimed he is blind in court documents filed against model Beverly Johnson.

"He can't write, he can't read, he can't draw or drive -- he's blind," defense attorney, Angela Agrusa, told CNN on November 4.

In addition to what we have heard before, according to his lawyers, Cosby also has glaucoma in both eyes.

Steven Holcomb

American bobsledder and Olympic gold medalist, Steven Holcomb, was initially diagnosed with keratoconus in 2002.

Keratoconus has affected Holcomb's daily life and competitive skills and the depression took him to the point of suicide. in his autobiography, But Now I See, he recalled swallowing 73 pills one night that year, in an attempt to take his life.

Holcomb had corneal crosslinking and surgery to correct his vision, and a year latter, he won a gold medal in the four-man bobsled event at the 2008 Vancouver Olympics.

Steven Holcomb, 2010 Olympic Winter Games (U.S. Army photo by Tim Hipps, Public Domain.)


Slovenian-American hip hop and electronic music artist, Denis Jašarević, better known by his stage name Gramatik, has keratoonus too.

"I have moderate Keratoconus in my left eye and severe in my right. Diagnosed when I was about 11 years old around 1995." he said in a Facebook post.

A photo posted by Gramatik (@gramatik_lowtemp) on

Matthew Colwell

Australian hip hop recording artist, Matthew Colwell, better known as 360, was diagnosed with keratoconus when he was 19 years old and had a corneal graft a few years latter.

Even though he is legally blind in one eye, he hasn't lost his sense of humor and he says "I could be the first Ray Charles of rap."

360 at his Falling and Flying CD signing (Photo by BillyDines, Wikimedia Commons, CC-BY-SA)

Michaela Strachan

English television presenter, Michaela Strachan, is another celebrity who has keratoconus.

In addition to keratoconus she also had sever eczema and used to rub her eyes which cause them to became hugely swollen at times and according to her, "on one occasion they looked like giant red footballs".

Michaela Strachan (centre) (Photo by Jo Garbutt, Flickr, CC-BY)

August Alsina

24-year-old recording artist, August Alsina, revealed that he have keratoconus on the Angie Martinez' radio show on Power 105.1.

Keratoconus caused legal blindness in his left eye and loss of vision in his right. Alsina underwent corneal crosslinking which would hopefully prevent his vision from getting worse.

He posted a photo of himself during crosslinking on Instagram.

A photo posted by Yungin' (@augustalsina) on

Do you know any other celebrity, artist, athlete... who has keratoconus?

The History of Keratoconus

The History of Keratoconus - Drawing by James Wardrop (1808)

What is Keratoconus?

The word Keratoconus (kěr'ə-tō-kō'nəs) means cone-shaped cornea. keratoconus is an eye disease characterized by progressive thinning of the cornea, causing the middle of the cornea to thin, bulge outward, and form a rounded cone shape. According to the National Eye Institute, keratoconus is the most common corneal dystrophy in the U.S., affecting one in every 2,000 Americans.

But where did the name of Keratoconus came from? continue reading to find out.

A letter to myself: Keratoconus is not black, it's a colorful blur!

A letter to myself: Keratoconus is not black, it's a colorful blur!

My name is Beth, I was diagnosed with keratoconus at 13/14, I live in England.

Dear Myself (on the day i was diagnosed)

Wow you weren't expecting that were you. You're going to go home now and google everything possible to try and understand whats going on! Don't click images though, that's just going to scare you. I know you're thinking one day all you'll see is black, but that's not going to happen, don't panic.. Its not black it is a colorful blur!

A letter to my 16-year-old self on the day of keratoconus diagnosis

Now you know your dodgy eyes are due to something called Keratoconus

Dear 16-year-old Chrissy,

So you've just stumbled out of the doctor's office feeling very uncertain and stepping into the unknown.

You always knew something was wrong with your eyes, didn't you?

Remember how you would memorize the eye chart in the medical room at school so you wouldn't have to wear glasses?