Our Quality of Life with Keratoconus
Our quality of life with keratoconus will be of great concern, especially to those of us newly diagnosed with keratoconus. There are many clinical studies focusing on quality of life following a KC diagnosis.
However, this article is from the perspective of someone who has lived with KC(keratoconus) on a daily basis for close to 3 decades.
Being newly diagnosed with KC, or in the early stages of our diagnosis along with our vision continuing to deteriorate. This will without a doubt, cause us anxiety as well as asking ourselves questions like, what we can expect in terms of our quality of life with keratoconus?
In this article the topics we will touch are:
Can we Live a Normal Life with Keratoconus
Can we live a normal life with keratoconus? Yes we can. Even so, to achieve a high quality of life with keratoconus, we will have to play a large role along with our practitioner to achieve this.
In addition to this, we will have to define or redefine what is a ‘normal life’ to us.
Managing Expectations
Managing expectations does not mean lowering our expectations. Rather we should look to coincide our expectations with our own unique circumstances.
For example, the expectation of becoming a fighter pilot, entering the front lines of law enforcement or perhaps a firefighter might be some examples of expectations that may have to be managed.
For instance, we might not be able to be on the front lines of law enforcement however entering forensics could be an option. To manage expectations we have to honestly evaluate what stage we are in our diagnosis as well as what stage we are in our lives.
Another example is someone who is entering high school or university. This individual will have different concerns than say someone who is in a later stage in their lives, married with children and a mortgage for instance.
Furthermore, someone who is in the early stages of their keratoconus diagnosis will have a different outlook than someone who is in the later stages of their diagnosis.
Vision Restoration
Vision restoration will play a large role as far as how much we will have to manage our expectations.
First to be clear, when we speak of vision restoration, as it pertains to keratoconus, we are not speaking of restoring our vision permanently or reversing KC.
This would imply there is a cure for keratoconus or a treatment that could reverse our condition. At the present time, there is no cure nor is there a treatment that can reverse keratoconus.
In spite of this, vision restoration in our sense can be achieved artificially for a window of time with means of contact lenses namely the scleral contact lens for keratoconus.
As an illustration, my scleral lenses restore my vision to 20/20 for about 13 hours. This is the time on average, I can wear my lenses in the course of a day and function at a very high level.
In contrast to when I am not wearing my lenses. I function at a much lower level thus expectations in this state are to be adjusted differently, as is to expected. My frustration level is lowered because of this understanding.
How will Keratoconus Affect Our Lives
How does keratoconus affect your life? The degree to how KC will alter our lives will differ from person to person. However, we can speak in general terms. As mentioned earlier, the ability to restore our vision will have a large impact on how our life will be impacted by keratoconus.
Different Degrees
The impact of KC on one’s life is never subtle. Although this may be true, there can be different degrees on the impact on our lives.
As an example, I was diagnosed in my late teens back in 1989 with keratoconus and was prescribed RPG contact lenses, not scleral contact lenses. Sclerals at that time were not an option for me.
The ordeal was horrendous and painful so unfortunately I had to stop wearing them. A few years later I underwent a corneal transplant for my right eye. Under those circumstances the effect on my life was tremendous.
For one thing I had to stop combat sports which I loved like boxing, kickboxing due too of the transplant I had undergone. I had to manage my expectations to train others rather than getting into the ring myself.
In contrast to someone who has not had to undergo a corneal transplant. They where fitted properly with scleral lenses to restore their vision early in their diagnosis. This person would have a different experience than mine. The impact of KC on their lives would be different to the impact KC has had on my life.
So it is important to understand that KC, no matter what, will effect our lives. To the degree and extent will depend on each individual case. Some of us will just power through life and for some of us things will be more difficult.
Is Keratoconus Life Long
Is Keratoconus Life Long? Yes. KC is something we will have to manage and cope with for our entire lives. Or at least until there is a cure or a way to reverse the condition.
The sooner we are able to get a clear understanding of what keratoconus is, what our options are along with working closely with our practitioner, the better our quality of life with keratoconus will be.
Be Vigilant
It’s important to stay on top of the condition. This means staying in touch with our practitioner in case there are any changes to our condition.
Having a competent practitioner at our disposal can certainly help to keep our anxiety levels manageable.
If there is a change in our condition, whether it be our cornea continuing to thin or we need a slight adjustment in our contact lens prescription, knowing that we have expert help will free our minds to focus on other things.
To Summerize
Living a productive high quality of life with keratoconus will take some forethought, planning and understanding of our situation. This is so important in order to avoid constant frustration and beating ourselves up.
We’ve all heard the stories of athletes and other high achievers that suffer from keratoconus and have gone on to do great things. Every situation is different and there will always be challenges for us. However, you, me and all the others with KC are not alone, we can all push each other to to get past our hurdles.
You’re not alone.