Keratoconus- my story by Leonie

Hello everyone,

My name is Leonie, I’m a 23 year old Dutch lady and I have Keratoconus. They found out I have this eye disease when I was about 12. I had been wearing sclerals for almost 3 years, when I was 15 I had to get my first corneal transplant or graft.

When I was 16 I got my second transplant, but things got a little difficult there because on the day I was supposed to get my transplant they found out I have iritis/uveitis. I probably got it in 1998, but back then they never knew what it was.

I had to take a lot of medicine to make sure it wouldn’t flare up in the next few days, before I could even get my transplant. I got my transplant 2 days after the date I was supposed to get it.

I also suffer from depression ever since they found out I have KC, and living with both KC and depression is kind of hard at times. So, I really want to share my story with all of you, because it was and still is (sometimes) an emotional rollercoaster for me.

The gift of sight

When I got a phone call from the hospital telling me they found me a donor, I was happy and sad at the same time. I knew I could finally see properly again because of this beautiful person, donating his/her cornea to me, but I also knew a family somewhere in the same country as me was going through hell because they lost a loved one. Mixed feelings. I was only 15, my donor had to be younger than 25 so maybe he or she was still a kid too… Not a comforting idea at all.

I’m still very thankful for this person being brave enough to donate his or her cornea to me. The family wanted to stay anonymous so I could never thank them.

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So I’ll just say it again:

Thank you so much for giving me this opportunity! You really changed my life.

The days went by very fast and I was super nervous and excited; within a year I could finally see better again! But on the other hand I was kind of scared too because I didn’t really know what to expect. I prepared myself for what was coming but I didn’t really know where to prepare for. Yeah of course they told me everything over and over again and what I could expect and how things would go in the next few months, but theoretical things are always different than when it actually happens. I didn’t know anyone else with KC and I never told my family how I felt about all of this, how nervous and scared I was, I just dealt with it myself.

It had a huge impact on my life and I only made it harder for myself by not talking about it, I didn’t do it on purpose but I just didn’t know how to express myself so I just didn’t.

The next few years after my surgery were hard for me as well, because I still would never talk about it, when people asked me about my eyes and how I felt I would always tell them I was doing fine, talk about it as if it was a very common problem and not a big deal at all. But getting a transplant kind of is a big deal, isn’t it?

When I woke up from surgery my eye felt really sore and uncomfortable, but other than that and a massive headache, I felt pretty good. This was a beginning of a new chapter in my life.

I must admit that I forgot how a lot of things went after my surgery, because time was going by super fast. It was 7 years ago, I was young and this is the first time I’m talking about my life with KC like I’m doing right now.

Regaining my sight

I can remember how it was to see my sight change though, that’s something I will never forget. It was amazing! As time passed, I could see everything more clear again, I noticed how many different colours and shapes there were,

I could see depth again. Everything was so beautiful. Everything was so noticeable. It was such a relief to see like this again after all these years.

A lot of eyedrops, creams and other medicine have been used in the first few years, it was a pain in the ass at times but it paid off in the end; healthy and clear transplants!

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Now 7 years after my surgery I’m still very thankful I got a second chance with my eye sight. Not everyone gets a second chance. I still have difficulties going on with my eyes, and expressing myself, and enjoying things.

But I’m still super happy I got my transplants. I still need to wear scleral contact lenses. And no, I still don’t have a perfect sight, and everything can be super frustrating, but at least I can see more now than I could when I was 12.

 Leonie

@marielleonie find me on Twitter with the #kcfamily

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2 thoughts on “Keratoconus- my story by Leonie

  1. Mooi geschreven meid ❤ je praatte er misschien niet veel over maar ik weet het allemaal nog zo goed en wist dat je ermee zat. Dat soort dingen voel je gewoon aan als je zoveel met elkaar omgaat 😉 ik hoop dat het nu wat beter met je gaat en je je depressies minder frequent zijn…

    Wees trots op jezelf!!

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