Keratoconus Support Group
Keratoconus is a degenerative non-inflammatory 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 even curve. Keratoconus can cause substantial distortion of the vision, with multiple images, streaking and sensitivity to light all often reported by the patient.
Hi,
I live in Toronto with my family. Recently, I have been experiencing difficulty in seeing long-distance things. I thought, it can be corrected by using glasses. But when consulted an ophthalmologist, everything turned upside down. The ophthalmologist suggested for some tests and I was diagnosed with keratoconus. Even my father had the same disease. As keratoconus is progressive I'm really worried thinking of this.My father lost his vision at the age of 55 due to this. He is falling to depression. How can we make his mental heath stable?
I have heard keratoconus is heriditary. Is it true? Does I too experience what my father went through? I'm really afraid of this diesease? Is complete cure of keratoconus possible? Share your knowledge.
Thanks!
The first thing to do is to stop or slow down the progression of the Keratoncus. I was part of a long-tern study on Keratoconus several years ago, and one of the results found is that wearing corrective lens tends to stop or slow down the progression of Keratoconus. The most common corrective action is to wear hard contacts (Rigid Gas permeable - RGB lens). These do take time to get used to - I would describe it as 2 weeks of misery before they are comfortable. I wore them for 20 years, and for the most part my Keratoconus stayed stable.
There are downsides to RGP lens, though. I found I was much more sensitive to wind and dust, and they also tend to move around a bit on the eye. I am very near-sighted (power -15) so my RGP lens were thick and after 20 years they became very uncomfortable, and they did produce a little bit of scarring on my cornea over time. So then I went to a piggy back system - wearing a disposable soft lens under my RGP lens. I did this for 2 years - it was much more comfortable, and made my eye resistant to wind and dust. I would highly recommend trying out the piggy back method is RGB lens are uncomfortable. I used the disposable soft lens for 2-3 days, to keep costs down. The main downsides with piggyback are having to deal with 2 lens in each eye, and also the RGP lens tends to move around a bit on top of the soft lens. I had to try out several brands/materials of soft lenses to find ones that kept my RGP lens in place. FYI - Coopervision Proclears worked well. However I play a lot of tennis, and all the movement on the court would cause my lens to move around and vision to change.
So I then switched to Scleral lenses, and those work great. They re huge (16 mm in diameter) but they are way more comfortable than RGP lens. They do not move while playing tennis, and my eyes are now unaffected by wind or dust. My vision is also clearer. There is a strange effect with Scleral lens - while I needed a power of -15 for my RGP lens, I only need a power of -7 with the Scleral lens. The end effect is my vision is less distorted,
So anyways, I'm 50 years old, and have been dealing with Keratoconus for 30 years. The main thing you need to do is get some lens fitted. I would highly recommend Scleral lens, but I understand they can be intimidating at first. I have not tried some of the procedures, such as cross-linking, but from people I've talked to it doesn't help all that much. Just getting lens will slow down the progression. I find that the 16mm Scleral lens are easy enough to get in and out of the eye, and are easy to maintain.
As for a "cure" there is the possibility for a corneal transplant. These are more successful these days - I believe they are using freeze-dried corneas now, and there is less rejection from the body. However success with a transplant is not guaranteed - it should only be considered as a last resort.