A Two-Decade Journey with Keratoconus

I was diagnosed with Keratoconus in my 20s. I am now 46. I had no idea what it was going to be like.

This is what it’s like for me to live with keratoconus.

Night Driving:  is horrible. It’s difficult to see because of the glare keratoconus creates from street lights and head lights, and it’s hard to see the lines in the road if the road is not brightly lit. When the roads are wet or my windshield is wet, the glare reflects and is even worse. These are some of the best keratoconus vision simulation pics I’ve seen:

Daytime - Daylight without sunglasses is painful.  Sunglasses help – a little. But I even have to wear them on cloudy days.

Soft contact lenses – Wore them. They don’t make soft lenses strong enough to correct my vision now.

Gas Permeable lenses – Wore them. As the disease advanced they became very painful and my wearing time went from twelve hours a day to two hours, then none.

Taking off my glasses:  After about 10 hours the contacts need to come out. If I am wearing my glasses, and I take them off, I’m in trouble.  I can’t see well enough to find them – I have to feel around for them. I literally need my glasses to find my glasses.

Correcting my vision entirely:  Is not possible.

With glasses: My glasses were just replaced a few weeks ago. Initially they felt so strong I thought they weren’t mine.  Now they still help quite a bit but I can already see some decline in their effectiveness.

SynergEyes - They have been a GODSEND for me.
•  I can more clearly than I have in 20 years.
•  Three years later, they are still comfortable, even for longer periods of time
•  My keratoconus is not advancing quickly anymore.
•  I feel safer driving at night because the distortion is so much more under control. Far more crisp, far less halos/reflections.

Keratoconus Topography Pentacam (Becky Wilder)

My biggest frustration is no longer the vision issues. I suppose that I’ve gotten used to life with KC, and it is what it is for me. Right now, my frustration is with INSURANCE COMPANIES. I’ve been battling for 2 months to get mine to pay for my contacts, as they are $700. As anyone with KC knows, contacts are one of the best ways to manage corneal distortion and correct vision. My ophthalmologist and I both wrote up extensive documentation of the need, and he (doctor) lists the lenses as an “optical prosthetic”, necessary for my eye health. The insurance company has denied the claim three times. The third time they had a physician review the claim and deny again. She stated that essentially, I have vision problems, get used to it. Did I mention that physician is a plastic surgeon, not an ophthalmologist? I really sometimes think that they paint everything with the same brushes – either approved or denied, no research, no understanding of the need. I wish they could see through our eyes what the world looks like, feels like, with KC.

The above story was shared by Becky Wilder. 


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4 comments:

  1. Thanks for sharing your story. I wish there were employees having KC patients in those insurance companies.

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  2. I am so lucky to be the UK and not have to worry about insurance

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  3. Is crosslinking an option? If you'd like to stop it from getting worse and potentially correct your vision, look into CXL/T-PRK procedures offered in Canada. As long as your KC is not too far advanced, it has the potential to really help your vision.

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  4. 700€ is ridiculously expensive... I've got mine for ~110€/pc from Acuity (X1) but from my opth. no insurance covered. For the left eye. You can even order regular RGP lenses online at around 40USD if you know the specs you need. I think SynergeEyes are hybrids. Don't normal RGPs help you at all ? You have better corneal topography than I have. My thinnest location was 417um (in 2015). I have almost perfect vision with my RGP lens. I see almost as before if I dont take into account the various discomforts. Where are you from please ?

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