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/