FAQs for people with Keratoconus in Nepal

It just felt to me that many of us are worried and confused about what Keratoconus really is and talk about the treatment of Keratoconus in Nepal. As a solution, I just thought to share some FAQs and answer them with the best knowledge that I have so far. I will try to answer in short so that it doesn’t get really boring to the readers. I’ll try to add the questions and their answers regarding Keratoconus in Nepal over time.

Let’s begin with the general questions and then dive into the specifics:

    1. What is Keratoconus? What causes it?
      • Basically, it is an eye disorder in which the cornea starts to thin and starts to bulge into a cone-like-shape. The cause behind Keratoconus is not much known. A few types of research suggest it to be a hereditary disorder, and some say it might be caused if you rub your eyes a lot much. You might have fruitful reading about my experience with Keratoconus in this previously written blog post.

        Source: firsteyecareirving.com
    2. I see multiple images overlapped and glare of lights in my eyes, is that Keratoconus?
      • There might be other reasons for this kind of vision but yes you also see multiple images overlapped and glare of lights in my eyes when you have Keratoconus. This is what you pretty much see:

        keratoconus vision
        Source: bettnervision.com
    1. What does “progression” mean in Keratoconus?
      • Progression simply means whether or not your cornea is thinning over time. A Keratoconus in progression means your cornea is thinning over time. To find out if your Keratoconus is under progression, you need to take the cornea topography test (known as Pentacam in Nepal) over two separate time intervals. If the thickness of your cornea is decreasing over time then your keratoconus is said to be in progression.
    1.   Can I do LASIK (Laser Eye Surgery) to cure Keratoconus?
      • Unfortunately, LASIK cannot cure Keratoconus.

        Depending on the thickness of your cornea and the rate of progression of Keratoconus, a specialist may suggest you the remedy accordingly.

    1. Can I wear glasses to correct my vision?
      • No, for most of the Keratoconic patients glasses don’t work well. As the problem is with the bulge in the cornea, glasses can make things look a little better but not perfectly fine.

    1. Then what’s the cure for Keratoconus? 
      • There is no specific cure for Keratoconus that brings back your vision to normal. Rather, depending on the thickness of your cornea and the rate of progression of Keratoconus, a specialist may suggest the remedies accordingly. They might include following remedies:
          1. Rigid Gas Permeable (RGP) Lens or Hard Lens: When Keratoconus is at basic stage, you might be recommended with RGP or Hard Contact Lenses. These lenses help in slowing or stopping the progression of Keratoconus and try to fix the bulging of the cornea. However, as someone who had previously tried these lenses, I have found it to be a big-time headache in using them. Also, as I have heard from other people in Nepal who have used these, they have not been a comfortable solution.
          1. Scleral Lens: Scleral Lenses or mini-Scleral Lenses is different kind of contact lens whose edges sit in the sclera (white section) of the eye. This makes these lenses extremely comfortable compared to the RGP or Hard Lenses. They also help to slow down the progression of Keratoconus and improve the vision. However, they are extremely expensive and cost a minimum of around Rs.70,000-80,000 for a pair. These lenses are something I have been using for a while and have proven to be a boon to me.
          1. Cornea Collagen  Cross-Linking (CXL): It is a procedure that stops the progression of Keratoconus. This procedure involves putting drops of Riboflavin (Vitamin B) in the cornea and exposing it to ultraviolet (UV) rays which resultantly reinforces the cornea and halts the progression of Keratoconus. Usually, you are required to have the minimum de-epithelialized corneal thickness of 400 μm in order to conduct CXL. At Tilganga, the regular cost (waiting in the queue) of CXL is Rs.25,000 and for expedited process costs Rs.37,000 per eye.
        1. Cornea Transplant: This is the last resort for Keratoconus which is usually done when your corneal thickness is really low or when your cornea gets so thin that it tears ( known as Corneal Abrasion). Cornea Transplant, as the name suggests, is the procedure where you get your cornea replaced with another one. The risk with this is that corneal tissues might get rejected even after several years of cornea transplant.
    1. Who should I visit/consult if I have Keratoconus?
      • You should visit a cornea specialist in the first place to know about the status of your Keratoconus. Once you are done with that depending on the suggestions made by the specialist, you should then visit a contact lens specialist who can suggest to you on what kind of visual aid (glasses/contact lens) you should get.

    1. Which is the best place to check my eyes in Nepal?
      • I recommend you to visit Tilganga Institute of Ophthalmology on this matter. I have heard of several other eye hospitals but I do not have much imformation on them. At Tilganga, it might be a hassle waiting for the doctors in the queue, it is the best place. You should at first itself tell the optometrist that you have Keratoconus so that they can recommend you to visit the specific doctor. You can visit during the extended-hours (during afternoon) to avoid the huge crowd in the the morning.
    1. What are the other risks associated to Keratoconus?
      • Rapid progression of Keratoconus can result in tearing of the cornea. You might have to then go for a cornea transplant. Also, I have heard that since Keratoconic patients have extremely poor vision, the retina of the eyes have higher chances of tearing. Thus, it is suggested that we also visit the retina specialist to see if our retina is fine. I have however never found or heard of any Keratoconic patient who has have a tear in their retina.
  1. Who are some of the recommended specialists to consult on Keratoconus?
    • There might be many but let write the name of some of the doctors whom I know.
        1. Dr.Reena Gurung: Cornea Specialist at Tilganga Institute of Ophthalmology. She also has a clinic at Jawalakhel.
        1. Dr.Purshottam Dhungana: Consultant at Tilganga Institute of Ophthalmology. He has a clinic at Narayangopal Chowk named Visual Line. He is the one who imports Scleral Lens in Nepal.
        1. Dr.Ashik Pradhan: Contact Lens Specialist at Tilganga Institute of Ophthalmology. ( Extremely good person! But heard he has left Tilganga recently).
      1. Dr.Rachana Singh: Cornea Specialist at Tilganga Institute of Ophthalmology. (I haven’t met her in person but have heard her name from someone else)

That’s all for now. Do post me questions that you have in case you have any. I’ll add it to the list and try to answer them.

Disclaimer: The answers are completely based on my knowledge as a Keratoconic patient. My understanding might be wrong in some cases.

Join the community of doctors, and patients in Nepal with Keratoconus at: https://www.facebook.com/groups/993265627680756/

Keratoconus Diaries

Perhaps it was during the month of February or March when it hit me with an abrupt wish to put on spectacles for no reason. It was pretty normal for a kid of around eleven years, back then, to have such an illogical wish. I wanted it because I had collected some money out of the dakshinas during my bratabandha held back at our village in Eastern Nepal.  Every time I had some money I would give it to my parents and maintained a good record of the amount my parents owed to me. Once in a while, I would then ask my parents to buy me something out of my savings. Sometimes it would be a bicycle (gear-wala-cycle), or a Walkman, or some other stuff I had seen from my friends or on TV. Now was the time for spectacles.

With no other options left, my parents had to get their son a new pair of spectacles. However, they decided to take me to a doctor for an eye examination before getting one of those pairs. I clearly remember visiting the Lions Eye Hospital at Tinkune for the first time. Crowded with people all around, it had taken almost half of the day to have my turn and get done with the examination. The doc had prescribed me a pair of spectacles with corrective glasses for my myopic eyes. My first spectacle frame in blue color with lenses made up of glasses; I still remember the first time I wore them. It felt weird as I saw everything smaller and little shaken.

What I really see without the glasses or contact lenses.

I should have visited Lions twice or thrice every six months for the regular follow-ups for a few years. One sudden day, one of the doctors there told that I had this disorder called “Lazy Eye” and suggested me to visit some specialist who had her clinic at Tripureshwor. After visiting the specialist, I was asked to put on eye patch on my “active eye” and asked me to look only through the “lazy eye” for certain number of hours each day. It wasn’t an easy task to see through an eye with blurred vision. I struggled in the classroom to see what the teachers wrote. Not at all did it work well. After figuring out about the failure to use an eye patch, my dad then took me to TU Teaching Hospital’s eye department for the examination. Queues after queues, rooms after rooms, my examination was done. Although the term “lazy eye” vanished from the doctor’s report, I was told to have some other disorder in my eye. I was too small to understand or remember the term, but the docs had prescribed me a hard contact lens as a cure.

Putting on hard lens, in simple words, was clearly a torture. I would have rather chosen putting on eye patch, rather than this super hard plastic like material which felt like thorn in my eyes every time I had to wear them. I was in grade eight (around fifteen years) when I went to the school with that pair of lenses and would have more of my attention towards my eyes than towards the course work. I wonder how easy or difficult this thing would be to put those on these days as a grown-up man. I wonder if it really was such a pain in the ass because I was a kid or was it really a nasty little thing?!

I stopped putting on the hard lens and wore specs for a year. Sometime during this time, a relative of mine told about a specialist who was said to be a really good doctor. I started to visit him. Every time I visited him, he would have the power on my glasses changed. That was all that happened for next two years – a new pair of glasses in every six months.

After two years new pair of glasses session with the doctor, dad meet another doctor who sounded more promising. After couple of visits to this doc, I was suggested to put on soft contact lenses for better vision. Soft contact lenses worked like gem. I could see things a lot better. Almost five years I visited him. He was a good guy and took well care of my eye. However, sometime in between those five years, in 2015, I heard about the new laser surgery started at Tilganga Institute of Opthalmology and decided to try it. After visiting Tilganga and having a few examinations, I was asked to meet an consultant optometrist who revealed that I had a disorder called Keratoconus. The consultant asked me to visit some other specialist or visit his own clinic for a follow up. “Too commercial person” my mind thought when the doctor himself asked me to visit his clinic while I was right in front of him. Having no trust on the doctor, I continued with my previous doctor for the regular checkups.

Over the years, the lenses of my spectacles got thicker. I had begun my always on with chasma (glasses) life at the time when plastic made lenses was something new and I preferred the cheaper glass made lenses which would get scratches very easily. However, by 2015 the lenses were available in varied options and the glass made lenses were rare. The first time I had wore my glasses had a power of around -1 spherical power on both of my eyes. Now, it was around ten on my right and six on my left with cylindrical power added to it. I felt my eyes to have severely deteriorated and it showed no sign of stopping. I then decided to speak to one of my relatives who was also an optometrist. I told him about my regular doctor and about the incident at Tilganga. He then suggested me to have a thorough check-up at Tilganga once again.

November 2016, I visited Tilganga again. The optometrist who checked my vision coincidently told that my eyes seemed to be Keratoconic. He then told me to visit another room and asked me to tell the doctor that I could possibly have Keratoconus. The checkup was conducted, and the reports clearly showed both my eyes were Keratoconic. Keratoconus deals with the cornea of the eye and so was I asked to meet a cornea specialist. Upon meeting Dr. Reeta Gurung at Tilganga, I was told about a procedure called collagen cross linking (CXL). Since Keratoconus has no cure, she suggested me to have epi-on CXL which does not really cure the disorder but strengthened my cornea to stop the vision to worsen.

As one of the websites states, Keratoconus is a progressive eye disease in which the normally round cornea thins and begins to bulge into a cone-like shape. This cone shape deflects light as it enters the eye on its way to the light-sensitive retina, causing distorted vision. Keratoconus can occur in one or both eyes and often begins during a person’s teens or early 20s. Often, keratoconic patients experience changes in their eyeglass prescription every time they visit their eye care practitioner. It is caused when the corneal tissues weaken. Unfortunately, the reason behind this weakening isn’t much known.

CXL, one of the only options, except cornea transplant, to halt the progression involves putting on drops of Riboflavin (vitamin B) in the eyes for certain period of time and exposing it to the UV rays. There are two versions of corneal crosslinking: epithelium-off and epithelium-on. With epithelium-off crosslinking, the outer layer of the cornea (called the epithelium) is removed to allow entry of riboflavin, a type of B vitamin, into the cornea, which then is activated with UV light. With the epithelium-on method (also called transepithelial crosslinking), the corneal epithelium is left intact during the treatment. The epithelium-on method requires more time for the riboflavin to penetrate into the cornea, but potential advantages include less risk of infection, less discomfort and faster visual recovery, according to supporters of this technique.

It still took me a year to figure out if CXL was a right option. Firstly, I was afraid because I had been diagnosed with numerous disorders so far and wasn’t sure if the diagnosis was proper this time. Secondly, CXL was a very new procedure which was under clinical trials in several countries. In US, FDA was yet to approve the epi-on CXL while epi-off was just approved in April 2016. Europe had only recently approved it. The long-term outcomes and consequences of the procedure was/is still unknown. I also found out that epi-off seemed more successful then epi-on. Yet, with no better options and with a little hope to stop the worsening of my vision, I decided to go for CLX for both of my eyes in March 2017.

I had read and seen videos on CXL so much that the procedure didn’t seem much new to me. CLX for the first time was done in my right eye. It took me about three days to recover and get back to work. The second time, during the CXL of my left eye, I knew so much about the procedure that I was the one to brief about the disease to the assisting doctor during the procedure in the operation theatre. After almost a month, I was prescribed with disposable soft contact lenses for a few months until the hazing in UV exposed cornea was gone and the effectiveness of the procedure was could be analyzed. As I was out of the country for a year, I couldn’t go for any follow-ups.

After a year, I was back to Nepal. The very next day of my arrival, I went for the follow-up. Things seemed to have settled and CXL seemed to have worked. I was then suggested to go for mini scleral contact lens which could superficially correct my vision. Several trials and I ordered this super expensive lens. It was a magical moment reading the letters in the eye chart. Although the shadow of the letters couldn’t fade much, I could read almost until the last line. 6/4 is what I had achieved (it feels like 6/6 to me). As my optometrist said, I had gained a fine quantitative vision but not qualitative vision.  It had been quiet a while I had not seen such a picture-perfect world.

Normal vision, me without glasses or contact lenses, and with glasses. With the mini scleral lenses I see somewhat similar to the normal vision but with some shadow of the image.

In these few months, my achievement has been my friends asking me to read the letters and numbers which they cannot read from far, my courage to drive and walk in the dark, watch the 4K and HD videos with HD eyes, and see the world as it is. No more difficulties to figure out who is waving or is calling my name from a few meters away. Hopefully I will not have to go through the trouble of cornea transplant which has a risk of tissue rejection at any point of time in life. And that’s all in my Keratoconus diary so far!

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