“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 :D 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 :D

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 :D

[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 :D

27 responses

  1. Racheal

    Hi, Thanks for your story. I feel your pain as I have Keratoconus to and I have an appointment to see whether I am able to get a cornea transplant in my left eye and if that isn’t successful then I have very few options left as I don’t get better vision with contacts and my eyes are too far gone to get CXL done on them. I wish you well with your journey and I understand about having to give up what you love doing.

    September 29, 2010 at 1:04 am

    • thanks racheal, but still i do believe that we should not lose our hope, am i right? we could still make anything great despite of this situation :D

      November 20, 2010 at 10:42 am

      • Racheal

        I’m never going to lose hope :)
        It has been decided that I need a cornea transplant but now it’s just a waiting game due to the public health system here in Australia. I’m still using my camera heaps I just use the auto focus on my camera and hope for the best. Hope everything is going well for you too :)

        November 20, 2010 at 10:53 pm

  2. Ennever Reid

    Hi . I have Kerataconus to the point where the militery did not want to accept me. Well no my job has become tech savvy with a computer program that jumps, so there tends to be ocassional flaws. I need to know if it is a dibility.

    November 18, 2010 at 7:08 pm

    • according to my doctor, it is a disability depends on how this situation deteriorates your vision. this is progressive and not to scare you, might end with a cornea transplant. the only thing that I can do right now is to have some corrective contacts made specially for me :D

      anyway, dont lose hope :D
      this is only God’s test, he know we can handle it guys :D

      November 20, 2010 at 10:46 am

  3. Good Article

    April 18, 2011 at 9:56 pm

  4. Hello this subject is very interesting. Keep it going teammate !

    April 28, 2011 at 8:15 pm

  5. KC not the end of ME

    I am currently off of work for short disability due to KC. I suggest anyone with KC in the US to file for FMLA (if they are working) which protects you if you need to take any days off because you dont feel good, cant see, get headaches. I have been off the last few weeks. Thinking bout getting the cross-linking.. Good luck to all and God Bless. “See you later” ;)

    September 22, 2011 at 6:13 pm

    • thank you for the time reading my article. Yes, I’m still suffering KC but here in the Philippines, there’s a shortage in cornea, an average Filipino have to wait a long time to receive a good set of cornea. It’ll be no problem if you’re rich but our government doesn’t have enough program to cover people with this disability.
      thank you for suggestion. please spread this article, lets make the world know about KC
      till then and Godspeed. :D

      September 25, 2011 at 7:55 am

    • Abraham

      That is nice learning KC patients is eligible for FMLA. I had CXL and INTACS done to one eye, did not help that much still need to wear my special designed contacts (100% soft lens).

      October 30, 2012 at 2:16 pm

  6. alex

    Great Article.

    As a long time suffer of this condition , I can tell you I feel your pain, I had to switch careers 4 times to accommodate my condition, there is a great deal of ignorance about this condition in Australia

    January 16, 2012 at 7:21 am

  7. Thank you for providing a detailed formula for success in fmla military leave.

    January 27, 2012 at 5:21 am

  8. Well atleast your doctor made sure that you understood what was going on with your condition. I really knew how serious KC is until this last time I went to the doctor because I have lost so much of my sight within the last couple of years. I am so upset sometimes I cry at the thought of my bision being as bad as it is. Since I had no vision insurence I had to come out of my pocket with $400.00 for the first pair of hard contacts. Needless to say the new contacts are almost $700.00 dollars and I am no longer working. I do find it interesting that I tried to get this condition classified as medical so maybe my insurance would pay no go on that. Let’s keep one anpother in prayer
    Loren M.

    February 2, 2012 at 5:19 pm

  9. Reblogged this on the UREIQN project and commented:

    Thanks to those who read and recommended it to their loved ones and friends. Nice to know that despite of this we have a good support system and we’re able to take it easy. Thanks for the overflowing comment, apologies if I do not have much time to approve them and reply. People on KC, various KC teams around the world, thanks

    June 22, 2012 at 11:30 pm

  10. Jenofhearts

    I was offered at shinagawa LASIK the procedure of cross-linking with riboflavin. This will permanently stop the progression of KC. Pray for me as this will be on July 23, 2012. Il keep you posted on the results…

    July 21, 2012 at 11:16 pm

    • I’ll pray for you, i do understand what you’re going through. please do update me and I have a lot of questions for you :D keep safe and God speed

      July 21, 2012 at 11:26 pm

      • Verchie

        Hello Amherst,

        What is the status of your KC?

        October 28, 2012 at 5:19 am

      • Hello mam, wasn;t able to visit my ophthalmologist lately, i have to fix somethings with my HMO :D so far, my sight is still deteriorating and last thing they suggested is having some contacts specially made for me, just to “hug” my corneas. Anyway, how about you? please do feel free to share your experience with us :D Kaya natin to guys :D Godspeed

        October 28, 2012 at 5:41 am

    • Verchie

      Hello Jen!

      How did your operation go? I’ve had KC for 10 years already. Just came from Shinagawa the other day. MIght be needing Cross Link soon.

      Looking forward to hearing about your experience there.

      October 28, 2012 at 5:17 am

  11. Gabjanluke

    I am in the same condition as you are brother( 10 years) . My left eye is diagnosed with KC.Presently, I am using hard contact lens, but my vision is still deteriorating.It troubles me a lot specially at work. I am just hoping and praying that my KC progression will reduce.

    January 5, 2013 at 3:10 pm

  12. Pingback: Keratoconus my story by Y Valentino Nool- The Ureiqn Project « Keratoconus GB Living with KC

  13. I caught your post on Keratoconus GB. Nice blog you have! Get cross-linking if you can; you have options still. I’m in the US and it’s a LOT of money here but I had both eyes done at once and got 1/2 my vision back in my “bad” eye (not typical results). I also have stable vision all day and way less “ghosting.” Procedure is easy and painless. Hurts after but you’ll make it. I’m having a very slow recovery because I have Ehlers-Danlos syndrome and it causes poor wound healing (and KC). Lots of fun.

    Finally figured out you were writing in Tagalog. I speak Spanish and some of the words are the same as you know…was wondering what the heck you were saying! Take care…

    January 15, 2013 at 8:13 am

  14. SALAMAT for following my blog! SUWERTE…ha, just like Spanish again. “Que tengas buena suerte con los ojos” (that you have good luck with your eyes).

    January 16, 2013 at 8:57 am

  15. Stephanie

    I was diagnosed with kerataconus a year ago and was told CXL would correct the problem. I still have intense double vision and ghost images. Only one of my eyes experienced any correction. They want to redo the procedure which was insanely painful if my eye can handle it.

    I still work but my vision is so bad I can’t drive or read well. Hearing about other people having this condition makes me feel much better.

    February 6, 2013 at 12:16 am

  16. Stephanie,

    I still am following this thread and hope it’s OK to answer your question. Ahh–what doctor told you this? I had bilateral CXL in the US. It halts the progression–that is all it’s designed to do. It is not a cure, although about 1/3 of people get some VA back, but usually 1 or 2 lines on the chart. I read all the medical journals and had a top surgeon. I lucked out in getting a lot of VA back in my bad eye, but I still have keratoconic vision in both and it’s a mess (I can’t really drive, either)! If you stop advancing, the CXL worked and does not need to be redone. OMG–wouldn’t want that! Just Google it or search on: www. nkcf.org. I have a category on my blog about my CXL and post-op check-ups if interested and KC in general. I know it sucks! I’m 6 mos out and getting kind of depressed about my vision, since I can’t wear contacts (and still having post-op issues). You could also get Intacs once you’ve stabilized, if available.

    A :-)

    March 7, 2013 at 12:40 pm

    • Sorry, meant 2/3 of people (can’t see)!!! It’s around 68% or so–can’t recall the exact #. You can find this in the medical literature. Some people get no VA improvement, just a halt in progression like the rest. I presume I got a lot back as I got KC from a connective tissue disorder (EDS) and have an atypical-type. Hope that helps!

      March 7, 2013 at 12:45 pm

  17. Hi there would you mind letting me know which hosting
    company you’re working with? I’ve loaded your blog in 3 completely different
    browsers and I must say this blog loads a lot
    quicker then most. Can you recommend a good web hosting provider at a
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    April 17, 2013 at 6:30 pm

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