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.

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!

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