keratoconus, my story by Akhil

Keratoconus, you lose!

The Start:

I was born in 1988. For the first 13 years of my life, I did not know what perfect vision was. It’s like a paradox, how do you know what is the definition of good vision? You can’t try someone else’s eyes for a day. You always see the world through your own, which is what color is to you, that is what clarity is.

Then a teacher at school noticed me reading with my eyes too close to the book. That moment defined my existence since then. What would I be if she had not done that? I don’t know. Her observation started a chain reaction. I went to an optometrist and he leisurely put on those spectacles with interchangeable lenses that these people use to test and correct vision. He began with a small number, then bigger and bigger until he was finished. Whatever he put in front of my eyes either didn’t do anything or made it worse. He was baffled.

I was referred to a more capable facility, where the doctors finally told me what is going on. That is when I first heard the word Keratoconus, what it does and how rare it is. He told me that only contact lenses would help me. I was ecstatic! I constantly pestered my dad to get me blue colored lenses.

We arrived at the contact lens clinic. The doctor tested my vision and then put on hard lenses to check for comfort and fit. Oh what a torture that was! I could not lift my eyes above waist level. Then the worst news was broken to me: Semi soft contact lenses, that I would need to wear, do not come in colors.

The Fight:

Thus began my relationship with Rigid Gas Permeable lenses, which is still going on. Initially, I refused wearing them to school since I was confident that my normal vision is enough for day to day operations. It was only when I got used to the tremendous vision improvement with lenses that I thought about wearing them daily. My school was about 6 kilometers from home and I had to cycle all the way through. India is a dusty country, so those 6 kilometers meant I went weeping all the way. I tried wearing goggles, but they did not help much and only made me self-conscious.

The task of keeping the lenses clean and the constant tension due to them flung me into the world of Obsessive Compulsive Disorders. I was a teenager and the pressure infected almost all areas of my life. I would wash my hands a thousand time a day, would never touch my eyes and spend around 40 minutes daily cleaning the lenses.

One day while I was going to school, the obvious happened. Dust got into my eye and decided to take a walk between the cornea and the lens. My right eye got severely bruised. I brushed it off as just a bigger instance of a normal routine of eye pain and went on with my life. During my next yearly eye checkup, the doctor told me now I had a Corneal Opacity as well and the vision in my right eye would be reduced considerably.

So, the first year of my contact lens days was pure hell. I was absolutely unaware what to do and what not and all the things that could go wrong did. The good thing was that my KC was constant from the beginning, around -6 in both eyes and unchanging.

The Silver Lining:

The huge responsibility of taking care of two little pieces of plastic in your eyes, which have a strong liking to come out when you least expect them, matured me a lot. I have changed more than 15 different sets of contact lenses in the 11 years I have been wearing them and never lost a pair. This is a huge accomplishment, because I never stopped myself from being normal in any way. I took part in all types of sports, played football till state level and did things that any teenager would do. I remember during our last football match, I played with only one contact lens, reducing the chance of injury by 50%! I started taking much more care of my eyes and the lenses.

Along came college and I had to move out from home. Life in the hostel provided further challenges. Simple things like no attached bathroom became big headaches to someone like me, who was already reeling under OCDs. It was during this time that I got my first motorcycle and fell in love with life on the road. I always wore a helmet, which was completely sealed and air tight with duct tape, which became my signature look! Below the helmet I wore goggles. With this double layer of protection, I travelled around India uninhibited.

“Fortune favors the brave” holds completely true for me. On multiple occasions, while I was driving on roads with heavy traffic, one lens would come out. Sometimes it got stuck inside the helmet, sometimes somewhere around the eyelid. I would somehow make my way to the side and find it and put it back and get on. It was sheer luck that the lenses never fell out into oblivion.

Another instance would be during school, while I was playing football, somebody hit me in the face and the lens fell out into thick grass. Now the funny thing is, if your lens falls out, you don’t even have enough vision to find it! So like many other occasions, I was left with no other option but to brush lightly with my hand the entire area I thought the lens might have gone to. I have no idea how, but it always worked!

During my final years in college, I got into photography. Even with contact lenses, my vision is not perfect, due to the opacity and the very nature of Keratoconus. I believe this gave me a different perspective to the world. My photography is less about the finer details and more about the mood; it’s an impression of the world that I see.

Life goes on:

Some of you might wonder why I have not gone for any other alternative for correcting this disorder. I have heard about Intacs rings, C3R and some other procedures, apart from cornea transplant, that could help in this matter. The biggest reason is fear. I am not confident enough in the medical services provided here and feel that life with contact lenses is not that bad after all. It is a bargain, but I have decided to carry it for the future, at least till there is a sure shot treatment available that I can take without objection.

So for anyone out there who has just been diagnosed with this rare disease, there is a silver lining! A life with contact lenses does not have to be any less exciting, rewarding and crazy than a normal one. You are different than most other people out there, that is a blessing in disguise.

I have driven more than 40,000 kilometers on my bike and 20,000 kilometers in cars on the dusty roads in India in cold and rain and sun, have taken more than 8000 photographs, worked in 2 MNC’s in day and night shifts, and lead a normal life. Here I am photographing my friend during a suicide burnout! Why? Because it’s fun.

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 So go out there and do what you want to do! The only limitations are those you set on yourself. If you wish to contact me, https://plus.google.com/u/0/112685199293700779997/about , https://twitter.com/AkhilKalsh and https://www.facebook.com/akhil.kalsh would get you there.

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16 thoughts on “keratoconus, my story by Akhil

  1. I’ve been diagnosed with Keratoconus too. At first it was in my left eye within 3 years, the vision in my left eye is completely gone. And now my right eye is losing its vision. I’ve been told contacts will not work for me for the disease is too advanced in my vision. My only solution is CXL which may or may not work or a corneal transplant. I am too scared to have the corneal transplant, so I am preparing myself to loose all vision. But your story gives me hope and I am thankful to have read and met your acquaintance:)

    • Hi. If you have no vision in your left eye then CXL is unlikely to be of any use- as it is for mild and early keratoconus. CXL may hep your right eye however. Have you actually tried nay contacts at all? there are many types that could help your vision. A graft is always the last resort when no lens at all can be worn, but for mnay is the best option, it is a very common op with a 97% success rate the most success of all human transplant operations, so do not be scared. There is no need to think you will be ‘blind’ you do have choices to help your vision improve. Good luck
      more info http://www.facebook.com/keratoconusGB

      • Thank you for your response. I have not tried contacts at all. I have been to two opthamologists and they both made it seem as though contacts or glasses would not be a solution for me. I don’t think the vision in my left eye will return unless I have the surgery. But I am working on having CXL done on my right eye to stop the keratoconus from progressing in it. Saving the vision in my right eye is my main concern at this point, Thank you for posting so much information. I have started to research solutions on my own as well:)

  2. La’ Vasha B, if my story gave you even a litter glimmer of hope, my job is done! Like Rae said, you should never give up. There are many procedures that can help restore your eyesight, you just need to research a little and be proactive. As far as a transplant is concerned, even i am scared of it, it is always difficult going under the knife. However, statistics, biology and people’s experiences tell us that it is a very safe procedure. Stay in touch and let us know of your progress!

    • Thanks for sharing your story Akhil. It really helps to know that I am not alone and there are procedures that can be done to help my vision. I will keep you posted as I go to future appointments:)

  3. This story is indeed enlightening and helpful. I have also been diagonised with Keratoconus recently and life has been difficult for me since then. Even I dont have immense trust on the ophthalmologists so i was pretty reluctant about going for C3R surgery and so i chose to try lenses for some time and then decide about surgery. I had quite uncomfortable experience with semi soft lenses as well. I wasnt able to open my eyes or move my eyeballs without pain. But with the vision I got, it was like looking at a world i have never seen before.Everything was so clear and crisp and i am hoping the rest of pain and discomfort will go away with time.

    But my doctor is repeatedly warning me about severe loss of vision if I dont go for C3R soon.When i asked him about how much time we have, he has no answers. Can you guys please share how much time it normally takes for the vision to deteriorate.I have currently a power of -4 in left and -1 in right eye and I get almost 6/6 vision with lenses now.It will help me decide whether or not to go for my surgery soon.

    • you can only have C3R or cxl collagen cross linking treatment if your corneas are above 400 microns, so that is why he is telling you get it done before they deteriorate further, and after thaqt the only option to restore sight is a corneal graft
      Bear in mind that cx, c3r and a graft are not a guarantee that afterwards you won’t need either lens or glasses to correct your vision
      good luck

    • Hey Priyanka, I am not the authority to comment on C3R, I don’t know much about it. I have been wearing semi soft’s from over a decade now and they are serving me fine, even with the eternal problems here in India. If your vision is not deteriorating, then my personal experience says stick with the lenses. I would encourage you you to talk to different ophthalmologists and get different opinions, then decide for yourself. Good luck with whatever path you choose and keep us posted!

      Akhil Kalsh.

  4. Hi Akhil,
    Your story is motivating and give huge hopes.
    I was diagnoised with KC 4 years ago and did perform C3R during that time. Now I have an acceptable vision however I could see an image forming on the face of the person when the person is not close to me. Dr. Vinay Agarwal from Mumbai is where I am consulting over the years now. He says that I have modereate KC and can now sustain with glasses. I would want to enquire more about lenses. He said that the cost of the lenses can range from 8000, 22000 to 56000 depending upon the fit. Do you think that this is the normal charge? I think I would have to shell out this amount every year which would turn out to be an expensive affair. Would you give me some detail like the comfort level, cost, how to use, pros and cons?

    Can I get your contact number?
    Thanks in Advance

    BR.
    Vikas
    + 91 9833965988

  5. Hi Akhil,

    What about effects from light like halos, blurring and etc. I have keratoconus and that is the most difficult part. My left eye is pretty bad and my right eye is just beginning to decrease, but it is already affecting all the lights I see at night. Do you get those effects? How do you deal with that while working / traveling?

    • Well fitted contact lenses will combat a lot of these issues – in fact well fitted contact lenses can be life changing and there are many types to try/ rgp, hybrids, sclerals etc

      • Thanks for the response. I just got hybrid contacts about 2 weeks ago and am having trouble adapting. At the moment, they seem to cause more problems with glare, but increase my actual reading ability– my doctor mentioned that I can re-fit them so I will have to bring this up to him =/ hopefully I’ll see some improvements with continued use.
        -Ray

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