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The Keratoconus Story of a Dutch Woman

When i was sixteen I figured out i had more and more problems with watching the whiteboard at school. My parents went with me to the hospital and I got glasses. A world opened up for me! I saw colors, leafs on trees and more thinks I never had seen before so clear.

After a couple of months with glasses I told my parents I couldn’t see good anymore and I had so much headache. So we went to the hospital again. There was the diagnose: Keratoconus. My vision was a few months rapidly deteriorated.

This  was almost twenty- four years ago. At that time there was no Internet. The doctor told me I needed hard lenses and when I was lucky the deteriorated would stop at 40.

Twenty years I had hard lenses. I lost them a lot and  the deteriorated went on. One year faster than the other year. When Internet came I looked for keratoconus and found out that pain in my eyes for light was normal for keratoconus. I thought I was weird wearing my sunglasses always.

In 2008 I found a new doctor and he told me about sclera lenses. He also told me the story about the deteriorated will stop at 40 was not true.  He gave me sclera lenses first and two years later hemi sclera lenses.  Since my sclera lenses I have no falling out lens problems anymore but I got other problems. The last years I have unbearable pain in my eyes. Sometimes twice a week other times ones a month. The pain last for 48 hours. I now have painkillers to make the pain a little more bearable. I have problem with driving at night and without lenses I see really nothing.

But I’m thankful that I have lenses and can usually see well. I’m grateful  for finding other people with KC on Facebook and Twitter. From reading other stories i learn a lot and do not feel alone with my keratoconus .

Lots of Love

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  1. Lodi, you have done the best you could. What you call "Hemi-scleral" may have been "mini scleral". Stay open to what is new. A healthier lens just launched (with features of Scleral lenses but actually semi-scleral) is Rose K2 XL. Ask your doctor about these. I can understand what may have happened when you had pain. Such condition does not usually happen with Semi-scleral lenses....Rajesh Wadhwa (Optometrist, New Delhi,India)

  2. Thanks Doctor Wadhwa. I shall ask my doctor when i see him in februari! The doctors always told me the pain is not from the lenses. So i have no clue. I always blame the KC :-) Lodi

  3. Aan Zonnestraal oogziekenhuis bij het AMC is een hele goede oogchirurg verbonden. Dr. Vermeulen. Mocht je ooit een hoornvliestransplantatie moeten ondergaan, zij is degene waar mijn man naartoe is geweest voor zijn transplantatie. Een zeer kundig arts! Veel sterkte!

  4. Thanks for sharing your story. It really helps others like myself. Can you please tell me about your headaches? I also have headaches and I couldn't really find the real sources. I'm not sure if KC is the reason behind my headaches. My doctor couldn't confirm that.

  5. Voor alle nederlandstalige KC-patienten: er bestaat een lotgenotengroep op Facebook. Zoek naar 'Keratoconus Lotgenoten' en meld je aan bij onze groep van meer dan 100 leden waarmee je ervaring kunt delen en vragen kunt stellen.