Passing on Genes – Keratoconus

Everyone fears passing down certain characteristics or health issues to their children. Before children are even babbling, you are wondering if they are stubborn because of you or hungry constantly because of your husband. Maybe they are anxious around new people and you think it’s your fault. I’m like that, you say to yourself.

What about health? I hope they don’t get my Dad’s blood pressure or my grandparent’s diabetes or my uncle’s depression. All examples. All what we worry about sometimes.

I have an eye disease called Keratoconus which is severe in my left eye. There is no real cure. The only way to ‘fix’ it is via a corneal transplant. Only 5-10% of people with Keratoconus need the transplant, and at this stage, I could be one of those people.

I’m gutted. I’ve been living with Keratoconus for 10 years. My cornea is cone shaped and thinner than it should be. You wouldn’t know to look at me or watch me function in the world, that the vision in my left eye looks like the one in the bottom right corner:

keratoconu

You wouldn’t know that I can’t do anything fancy with eye make up or close my right eye to use a camera for photos or take aim at something. You wouldn’t know that sometimes, my eye gets so dry that my eyelid literally rubs against my cornea which is jutting out from the condition. And to top it off, I’m never ever allowed to rub my eyes as this can only make it worse. And you wouldn’t know that I can get severe, pulsing headaches behind my left eye because of it either.

I just function. I wear glasses which are supposed to stabilise the condition, but in my case, it has now progressed so much that I need to attempt a relatively new procedure called Corneal Cross Linking with its own risks, in order to avoid a transplant. This procedure is not only costly and not covered by insurance or medicare, but it is also risky and could have immediate consequences leading to a transplant if it fails. My current cornea thickness is not ideal for this procedure, therefore all risks and chances of failure are slightly increased.

I’m booked into surgery next month and it makes me feel sick in the pit of my stomach. Somebody messing with my eye. The possibility that it might not work. The pain that is sure to come afterwards. I’m so worried about managing the kids with one semi decent eye and I’m scared. Every time I’m looking at them through my eyes I’m scared. Will they get it too? Will it be this bad because it’s bad in me? Can I protect them from it? And I can’t do anything. I’m helpless to the condition just as much as I am helpless to save them if they have it.

So lucky to have the medical technology to help us, but there’s still so much more to be done in this area. There is nowhere near enough awareness. And there’s my light bulb moment. Of how I can help them. I guess it all started with this blog post.

Do you worry about passing things onto your kids?

4 thoughts on “Passing on Genes – Keratoconus

  • So glad you spoke about your fear of passing something onto your kids.
    My hubby and I both struggle with these thoughts!! Gladly, fear has made us incredibly proactive.
    Our histories of mental illness have led us to start teaching our 3yr old mindfulness techniques, deep breathing and emotional resilience… Things we never learnt in our formative years, things that would have made our own journies much easier.
    For us, it is about laying the foundations now so that IF (and it is an IF) his brain chemistry goes haywire like ours, at least he’ll have some tools we didn’t have.

    Good luck in your journey, and hope full for a positive outcome for both you and your munchkins.

    • Thank you so much for your kind words Em. I think that’s a good idea – to become proactive about it. We can only do what we can. I hope that more knowledge around keratoconus becomes available for our kids should they be faced with it!

  • Oh wow. Both my other half and I have this too. Me only in one eye and him in both. Because mine is only in one it doesn’t worry me at all. I just seem to use the other one. But N has it in both. He uses hard contacts – which does improve his vision. We will be monitoring our girls very closely.

    • Oh I remember us talking about it when we met Caz! I had forgotten about that. I only have it in one mostly too. However, it is progressing and I’m heading towards corneal scarring if I don’t do something about it. Unfortunately it is getting to the stage where not even hard contacts will work for me as my cornea is becoming too thin.

      Definitely so important to monitor yourselves and the kids. It’s no fun 🙁

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