I knew something wasn't right, but optometrists didn't take me seriously!

My Rose K RGP contact lens

A few weeks before I started university in 2011 I booked my first eye test. I was diagnosed with astigmatism and hyperopia and was prescribed glasses, which corrected my vision. The optometrist also mentioned he suspected I may have a condition called keratoconus, but he wanted to review me a year later, so I didn’t think much of it. They initially worked really well, my vision was crisp and I was relieved of my headaches.

A year later, the clarity of my vision declined and the headaches returned. I assumed my prescription needed updating so I booked myself in for another eye test. Unfortunately the optometrist I previously saw was no longer at that practice, so I went to a chain optometrist instead.



I went on to have my second eye test and was told my prescription hadn't changed sufficiently and I should be able to see in my glasses. I questioned her of the possibility of having keratoconus, but she said I wasn't a suspect and my eyes were “fine”.

I decided to opt for soft contact lenses to see if it would improve my vision and I was self-conscious of wearing glasses outside the house. I have tried 4 different brands of soft contact lenses and although my vision was better than glasses, it still wasn't as sharp as the first pair of glasses I got.

I kept seeing different optometrists and although my prescription remained constant, I just couldn't see. My eyes were very slow at adjusting to the different lenses in eye tests. Sometimes I could notice the optometrists getting frustrated at me and I was often told my eyes were just lazy and I’d have to get used to glasses and contacts.

My keratoconus diagnosis

After 8 months I just abandoned glasses and contacts all together. I had headaches, everything was blurry again. I couldn’t go on like this, so I tried an independent optometrist.

This optometrist spent almost an hour with me for my initial eye test and patient with my slow eyes. Chain optometrists never invested that much effort on my eye tests. I asked him why I had so many issues with soft contact lenses and glasses. He said he was almost certain I had keratoconus. A few days later I returned for a topography scan which confirmed the keratoconus and I was fitted with rigid gas permeable lenses.

My RGP in my eye... look how tiny it is
I turned to the internet for support from other keratoconus patients and it really helped me. I must say though, no one was exaggerating when they said RGP lenses are painful, they hurt so much the first time I put them in, I was in tears in optometrists office. Ouch! It’s gritty, dry and tear inducing, but it does get better in time, I promise. There are also lubricants and rewetting drops which help. Nowadays my RGPs are comfortable, once I’ve put them in. Trust me, the initial discomfort is worth it. My vision with RGPS is fantastic.

Another thing is I’ve always had problems with allergies, eczema and I suffer from IBS and studies have shown keratoconus is linked with these conditions.

My future

Just a few days ago I had my first ophthalmologist appointment. The Keratoconus in my left eye is severe, he could see it just using a light. My right eye is also keratoconic, but not nearly as bad. He is happy for me to continue wearing RGP lenses. My vision is 20/30…one line off 20/20 and I am very satisfied with that.
He has referred me to a corneal specialist to discuss crosslinking, which is a minimally invasive treatment that strengthens the cornea. This can halt or slow down the progression, reducing the need for a corneal transplant.

I asked if I was going to go blind and was told no. He said if my corneas become extremely scarred, then I will need a transplant. I was very relieved as going blind was a major concern for me. I am training to be a nurse, I need my eye sight!

Aimee Scarlett

11 comments:

  1. You should find a doctor who specializes in scleral lenses. Much more comfort, much better vision and no pressue on the cornea. Just a suggestion.

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  2. Your story is a very common KC story: patient has visual complaints that are not diagnosed correctly or taken seriously. Sorry you had to go through that.
    I strongly recommend CXL - will prevent your eyes from getting worse.

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  3. Sounds so similar to my ordeal! Glad you stuck to your guns and got diagnosed!

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  4. I agree with Allan, I recently returned from a trip to Texas and got fitted with custom Laserfit scleral lenses. I can not tell you how amazing my vision now is, and the comfort is unbelievable. I can wear the lenses for 15 hours a day, pretty much from the moment I wake till the time I go to sleep. Also as a bonus if you have any dry eye issues, scleral lenses will fix this as well. I suggest you check them out if you are near or can make the trip out to Dallas. http://laserfitlens.com/

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  5. Hello everyone, thank you for all your replies, sorry about my late reply, was meaning to do it earlier then uni and work happened, but here I am now :)

    I have adapted really well, I am happy with my ROSE K RGPS for now, but when i get my new lenses I will request scleral. I pay $670 AUD for my RGPS, are sclerals much more?

    I am very sorry to hear so many people suffer from this condition, Cross linking is in my future, Maybe a few years into it.

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  6. That is pretty crazy. I can't believe that many optometrists just wrote off your concerns. It's a good thing that you were able to find someone who did the work that you needed. On top of that you were able to get some contact lenses that you can actually wear comfortably. It obviously was a long journey to get there, but at least everything worked out.
    http://www.drberggren.com/roc.html

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  7. It's really difficult to got through issues like this. I can't imagine how much harder it could be if people don't listen to you, or if they don't believe what you tell them. I think it's great that you were able to find the help you need. I think a lot of people decide to give up when people don't help them, and that leads to many more issues that are more serious in a lot of ways. You did things in a really smart way by continuing to seek help.
    http://www.lindenoptometry.com

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  8. It's really difficult to got through issues like this. I can't imagine how much harder it could be if people don't listen to you, or if they don't believe what you tell them. I think it's great that you were able to find the help you need. I think a lot of people decide to give up when people don't help them, and that leads to many more issues that are more serious in a lot of ways. You did things in a really smart way by continuing to seek help.
    http://www.lindenoptometry.com

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  9. I went to the chain vision care center, and complained about shadowing on the letters on the chart. At first that was dismissed, too, but, with contacts, my vision was pretty good. I went back, and he could see something was wrong with the cornea, though. My specialist at Northeastern Eye in Scranton said it was Keratoconus, and I got RGPs. That was about 18 years ago. I went back to the chain store, though, and educated that doctor on KC. He'd never heard of it. Anyway, after the KC progressed, and I developed a hydrops in 2013, I had to have a cornea transplant in my left eye. So, left has a scleral lens, and right has a Rose K RGP. Weird, but it's working great. Good luck with the crosslinking. My eyes are already too advanced for it. Having a Dr. who knows the best correction and what's good for you makes it so much better.

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    Replies
    1. Hi, thanks for your comment. if you would like to share your story as an article on this blog, you can do so by filling the form on this page: http://keratoconusgroup.blogspot.com/p/share-your-keratoconus-story.html

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  10. The caption is a little confusing. I think there is need to use 'some' to qualify Optometrists in the caption. Your first OD suspect it and it was finally also an OD that diagnosed it. Saying 'Optometrists do not take me serious' is insulting to those fine ODs that did their job well in your case. That some ODs didn't does not mean all ODs didn't .

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