Hi, I’m Sarah and I am 35 years old and live in New Zealand. I have had keratoconus for more than 20 years. I wear piggybacked Rose K lenses, and I had a corneal graft on my left eye 4 years ago. I thought I would write all my recommendations after all my years experience with this disease.
Artificial tears
If you wear contact lenses, these will soon become your best friend. I do recommend tears without preservatives, as the preservatives did eventually start to irritate my eye. Use them lots throughout the day. You may get strange looks and people questioning you about why you are using them so often, but your eye comfort is the most important thing to get you through your day with contact lenses in.
Sunglasses
Another very good friend to us KCers. You may need to wear them on cloudy days, but again comfort is the most important thing, don’t worry about what others think. They also allow you to drive without pain from glare.
Piggy back lenses
Another saviour for me. They have allowed me to wear RGP lenses comfortably and they stop pain from protein build up on the lenses. Unfortunately unless you can wear daily lenses, it does mean cleaning 4 lenses each night which is a pain. If you have trouble tolerating RGP lenses, consider trying piggybacks.
Your optometrist
You need to find someone you trust, and who has good knowledge of keratoconus and fitting contact lenses for keratoconus. You will be seeing this person at least every 6 months, so this you need to be able to develop a good relationship with this person and if you are having trouble you need to be able to trust that this person will listen to your problems and do their best to help you. I have been so impressed with my optometrist. My journey to corneal transplant started when the only soft lens I could wear on my left eye was discontinued. My optometrist tirelessly continued to try and find a lens that would fit and sourced lenses from different manufacturers worldwide to try and get one that I could wear. I was able to go through the graft knowing everything possible was tried to help me.
Eye specialist
Again, this is a person who you need to be able to trust fully. If you don’t feel comfortable with what the specialist is saying, get a second opinion. You can read about my journey, with trying 3 different doctors before I found one I was happy and comfortable with, and who was willing to help me on this site.
Corneal graft
If you have a corneal graft, patience is the most important thing. I have heard of people getting very good vision immediately post graft, however this is not common and most certainly did not happen for me. I did not see the full benefit until 1 year post op when the sutures were removed. I can tell you though, the wait was worth it!
Rest times
If you are wearing contact lenses, do give your eyes a rest from contacts. I know this a difficult, as often glasses provide very little help, but I know I feel so much better when I am able to give my eyes contact lenses free time. During this time you need to find things you enjoy which either don’t require vision, you are able to do with the vision you have, or can do with aids to help you, i.e. magnifying glass sheets. I have found reading with my e-reader fantastic. I am able to increase the font size so that I am not straining my eyes. I really struggle with books with small fonts and the e-reader means I can read these books easier. Another option which I haven’t tried is talking/ audio books.
Humour
Find the funny things in life. I love to laugh, and when I feel sad watching a funny tv programme or film can really pick me up. Life with keratoconus can be very frustrating and disconcerting, so it is important to find ways to cope – humour is mine.
By Sarah Monehan.
By Sarah Monehan.