Diagnosed
My Diagnosis
I was diagnosed in my teen’s in the late 80’s early 90’s with keratoconus.
I have a pretty good idea of how you might be feeling and what to expect.
Getting diagnosed with keratoconus (KC) can be overwhelming and a little frightening to be honest.
Not knowing what keratoconus really was or what to expect just added to my anxiety.
If you or someone you know has been newly diagnosed with keratoconus, maybe my experience will help shed some light on what to expect.
Getting Diagnosed
with Keratoconus
First off, yes it does suck hard, some destinations on the highway of life might be a little more difficult to get to.
We might have to take a detour, or two or three but it’s certainly not the end.
In fact, it’s the beginning of another journey on top of the many we have already embarked on and will embark on.
The earlier we are diagnosed, the more options we will have in our arsenal to cope and mange our condition.
I say manage because at the current time there is now cure for KC.
In my case like many of us in the KC community, my vision started to deteriorate early, around the age of 4.
That’s when I had my first pair of glasses. I still wear glasses around the home but to really function I must absolutely wear my scleral contact lenses for keratoconus.
Who Can Diagnose Keratoconus?
An optometrist will be the first professional, in eye care, to realize that there might be a problem. However, to be accurately diagnosed our case will be referred to an ophthalmologist.
Once we have been diagnosed this will be the beginning of many visits to our practitioner.
Even once the proper course of action has been decided on, a visit once a year is normally the case.
I see my professional once a year to this day.
How is Keratoconus Diagnosed?
How is keratoconus diagnosed? Our practitioner can use a combination of different methods and tools to assess whether we do have KC and how advanced our conditions is.
A refractive eye exam is one method. This method, uses a device called a retinoscope with a phoropter to test how different lenses are correcting our vision.
This test is useful for diagnosing KC by the unique way light, from the retinoscope, reflects in our condition.
Brings back memories of my eye exams and watery eyes.
Our practitioner will also have another test that can be performed. With a slit-lamp exam, a beam of light and a microscope will be used check the shape of our cornea.
This can also be used to spot early thinning of our cornea.
Been there done that as well.
With a keratometry, a doctor points a circle of light onto the surface of our cornea.
It uses the reflection of the light to determine our corneal curvature.
With corneal mapping or topography. Our practitioner will use photographic software to record images of our cornea.
They will map out our corneal thickness and irregularities in our cornea shape in the early stages of KC.
I remember this as well. My eyes are beginning to get irritated just remembering this one.
Impact of Keratoconus Diagnoses
The diagnoses will alter our lives, how, and how much will differ from case to case.
For example. How early were we diagnosed? The quality of our practitioners, our age.
What stage of our lives are we in at the time of our diagnoses.
Factors like these can make the impact of a keratoconus diagnoses different from person to person.
Someone diagnosed in pre-teens might face different life obstacles than say someone who was diagnosed in their thirties.
Access to resources could also play a role.
Do we have access to good affordable health care?
Some of the options to manage our condition can be expensive, invasive, or not.
In the thousands of dollars easily.
I wear scleral lenses that must be replaced every 2-3 years.
Also the solutions to help keep them clean and to store them.
These will be a recurring expense every month every year for as long as I want to function at a high level and remain productive.
Will we go Blind?
No! We won’t go blind in the sense of living in darkness.
We need to understand that keratoconus is a progressive disease.
So in almost all cases our vision will get worse.
As our cornea becomes thinner and more distorted so will our vision.
Therefore, early detection is vital.
The sooner we can possibly halt, or slow down the progression of KC, the better we can manage the condition.
Cross-linking is procedure that can slow down or even stop the progression.
However, does not reverse the condition.
It’s important to also note, that keratoconus does in most cases including myself stop progressing after a time.
Usually in our thirties as mine did.
This one of the reasons it’s important to stay in touch with our ophthalmologist so that the progression can be monitored.
If the advancement is aggressive like mine was, a transplant might be prescribed as was in my case.
I had a cornea transplant in my right to avoid complications of keratoconus like Hydrops which is a legitimate concern.
What’s the Future
It’s not grim nor is it dark. Getting properly diagnosed, having a plan for the correct treatment for keratoconus of action is the first step in us taking control of KC and not letting it run our lives.
Our lives yes might be a little challenging, however with preparation, some forethought, patience, doing our own research, and reaching out to others in the keratoconus community, we can learn to manage our condition and reach whatever goals we have set for ourselves.