“I’m legally disabled” | an awareness on Keratoconus

40 minutes past 9am, we’re still waiting for the ophthalmologist.  The line is getting longer and the magazines on the lounge are getting less interesting. It’s been weeks since the first time I’m having these headaches and I think it’s my eyes. I’m having astigmatism on every time I open eyes. Even though I just stare in a blank space, headaches will occur and bad thing starts to happen.

I filed a leave just to attend my appointment with the eye doctor; I can’t take the “eye-gony” anymore. It’s now or never. Well, enough with drama, the doctor came while all of his spectators were hooked at the Tournament scene of “The Kung fu Kid”. After 2-3 patients, it’s my turn for them to check my eyes. They even asked for my eyeglasses and measured it  [or test…whatever] with their high end technology. Then they tested my vision with their electronic version of that infamous chart that features that big letter E [I don’t know what they call that chart, neither the test, but I think their approach to that test is neat.]

Kung fu kid + magazines + cute nurses ; I enjoyed the long wait time because of those simple thing. Then Dr. Timothy called my name, we exchanged greets then went to that device where ophthalmologists examines eyes.

During the test he asked several questions like my allergies, previous sickness, dizziness and when I started wearing glasses. After few minutes he came up with a diagnosis : KERATOCONUS. Dr. Tim anticipated that I will answer him “okay” and a smile and gist of curiosity in my eyes.

He wrote that word on a piece of paper then handed it  to me; “Google it para matakot ka ha”, then he explained that  the maximum vision of an eyeglass is up to 300 and my eye requires 475 which is way higher. In conclusion glasses can’t help me this time. “On this point, I must say you’re considered as disabled” He’s not kidding.  Then he wrote further his diagnosis on a med cert then he instructed me to go to my medical insurance company to inquire if they can cover this certain procedure, “Hope I was wrong but just to make sure we have to perform further tests” . After 30 mins, I went back to Lasik Surgery Clinic and handed out the form that will allow me to undergo such procedure.

The procedure is called “Corneal Topography”; and with  a little help from Wikipedia, let me explain it;

Corneal topography, also known as photokeratoscopy or videokeratography, is a non-invasive medical imaging technique for mapping the surface curvature of the cornea, the outer structure of the eye. Since the cornea is normally responsible for some 70% of the eye’s refractive power,^[1] its topography is of critical importance in determining the quality of vision.

The three-dimensional map is therefore a valuable aid to the examining ophthalmologist or optometrist and can assist in the diagnosis and treatment of a number of conditions; in planning refractive surgery such as LASIK and evaluation of its results; or in assessing the fit of contact lenses. A development of keratoscopy, corneal topography extends the measurement range from the four points a few millimeters apart that is offered by keratometry to a grid of thousands of points covering the entire cornea. The procedure is carried out in seconds and is completely painless.

DETOUR : scenario during the Corneal Topography:

CUTE NURSE : sir, pkipatong po ang baba dito at pakidilat ang mata

[sabay turo sa apparatus na panukat ng mata, pero iba sya because it a lot bigger, nakakabit sa isang plaptop and nung tumingin ako sa eyepiece, laser ang nakikita ko, I was going to ask kung I was supposed to look directly at the laser, but I think I should since the nurse instructed me to put my eye in that eyepiece.]

CUTE NURSE: Pakidilat po ang mata

[dilat na kaya, sige ipilit nalang idilat]

CUTE NURSE : Wide Open po

AMHERST UREIQN: Uhmm..miss, todo na ‘to

CUTE NURSE: ah ok… [tingin sa laptop then] Uhmm wide open pa po.

[It sounds sexy at first pero naging katawa tawa…ilang miute lang tapos agad ang procedure]

CUTE NURSE: Ok nap o sir, print ko lang po ang result, just wait for Dr. Tim’s signal [then she as she hugs the laptop and walks her way to the other room, palabas na sya ng door when I interrupted]

AMHERST UREIQN:  Pasensya na miss ha, singkit ako, hanggang dun lang madidilat ko, must be my Chinese Genes. [barbero mode ---sana magwork haha]

CUTE NURSE: ok lang po, [then tinignan nia ako from head to foot] then she smiled

AMHERST UREIQN: [bulong ; she’s so dreamy] anyway much for a detour , back to story.

After an hour of eavesdropping to other patients’  “alta de siodad” [did I got it right?] themed conversation, Dr. Tim called me at last. He still have that friendly smile despite of the result he has on his hands.  “Tama ang hinala ko; it’s confirmed, you have KERATOCONUS”

He explained it in layman terms and I easily understood my situation. I asked some questions about it and I know he knows that within me is a withering soul, all I can do is smile back on his every answer and let him know that I understand the whole thing by some little facial expressions and gestures.

What is Keratoconus? What are the cause and effects ? too many questions for him answer so I decided to reserve it for further research. I spent almost 5 hours scanning the net about this irregularity and here’s what I found

Keratoconus (from Greek: kerato- horn, cornea; and konos cone), is a degenerative disorder of the eye in which structural changes within the cornea cause it to thin and change to a more conical shape than its normal gradual curve.

example of a pointed cornea

Keratoconus can cause substantial distortion of vision, with multiple images, streaking and sensitivity to light all often reported by the patient.

Right : this is how a person with Keratoconus sees the world

It is typically diagnosed in the patient’s adolescent years and attains its most severe state in the twenties and thirties. If afflicting both eyes, the deterioration in vision can affect the patient’s ability to drive a car or read normal print. In most cases, corrective lenses are effective enough to allow the patient to continue to drive legally and likewise function normally. Further progression of the disease may require surgery including intrastromal corneal ring segments, corneal collagen cross-linking, or corneal transplantation. However, despite the disease’s unpredictable course, keratoconus can often be successfully managed with little or no impairment to the patient’s quality of life.

On my case, my corneal topography shows that my corneas are both pointed shape and it’s center is located on the [almost] bottom part of my pupil . Imagine the center of the cornea is the one responsible for picking up the light . The regular curved shaped corneas will pick up light and directly send it  to the center of the pupil, making them see clearly due to regular pick up and distribution of light. Thus, my pointed shaped corneas pick up a subtle amount of light because the center of the cornea who picks up the light is located on bottom part of the pupil.

my Corneal Topography result : LEFT : is the actual scan of my right eye. RIGHT : topographical version, it shows that my cornea is pointed, and the red parts of my pupil shows the center of my corneas. it means its not on the center of my pupil thus my eyes cant pick up white light in a normal way.

Keratoconus affects around one person in a thousand. It seems to occur in populations throughout the world, although it occurs more frequently in certain ethnic groups. The exact cause of keratoconus is uncertain, but has been associated with detrimental enzyme activity within the cornea. A genetic link seems likely, as the incidence rate is greater if a family member has been diagnosed. The progression of keratoconus is rapid in patients having Down syndrome.

SIGNS AND SYMPTOMS

People with early keratoconus typically notice a minor blurring of their vision and come to their clinician seeking corrective lenses for reading or driving. At early stages, the symptoms of keratoconus may be no different from those of any other refractive defect of the eye. As the disease progresses, vision deteriorates, sometimes rapidly. Visual acuity becomes impaired at all distances, and night vision is often quite poor. Some individuals have vision in one eye that is markedly worse than that in the other eye. The disease is often bilateral, though asymmetrical in many patients. Some develop photophobia (sensitivity to bright light), eye strain from squinting in order to read, or itching in the eye, but there is normally little or no sensation of pain.

The classic symptom of keratoconus is the perception of multiple ‘ghost’ images, known as monocular polyopia. This effect is most clearly seen with a high contrast field, such as a point of light on a dark background. Instead of seeing just one point, a person with keratoconus sees many images of the point, spread out in a chaotic pattern. This pattern does not typically change from day to day, but over time it often takes on new forms. Patients also commonly notice streaking and flaring distortion around light sources. Some even notice the images moving relative to one another in time with their heart beat.

So what’s in store for me? Expensive Procedures. Dr. Tim told me that Eyeglasses cant correct it, either can’t be cured by Laser treatment. This irregularity is progressive and Dr. Tim warned me that I can go blind anytime sooner and if that happened, only a cornea transplant will retain my vision.  The only solution is having my eyes measured and create a special contact lenses that will hug my pointed corneas. The contacts will serve as my new normal corneas that will allow light pass through to the center of my eyes so I’ll be able to see things clearly   and he knows a few who can do that procedure. It’ll be costly for sure and unfortunately my med insurance company can’t cover it.

It’s so ironic that the one I need the most is the thing that will taken away from me one of these days. I learned to love sketching, films, animation, reading, writing, photography, shoot videos and edit them and anything that related to visual arts and literature. I fear that I have to learn to let them go, feel uninterested and live life in the abyss of darkness.. Well , grunting can’t do anything. I have to find more ways on how to cure this one and stop it’s progression. This calls for a further research. Have to wake up the geek in me . I’m scared.

So that’s for now. More prayers for me I guess. I’m worried.

So Till then and Godspeed

[articles and some images are  gathered from Wikipedia, National Keratoconus Foundation | nkcf.org and  keratoconus.com]

Well that’s for now…

So Till then and Godspeed