Going Blind

Well, it’s official. I’m going blind. Not all at once, and I may not live long enough to become legally blind, but it is happening.

I have keratoconus. Google it if you want, but essentially it is a progressive disease in which the cornea thins and elongates into a cone-like shape. This does wonders for one’s vision, as you can imagine.

I was diagnosed after a significant year-to-year prescription change early this year that was no longer right for me by the time the new glasses arrived. Two subsequent checks resulted in two different prescriptions, neither matching any of the previous ones. My usual eye doctor sent me to a specialist to confirm his suspicions. That happened this morning.

This disease usually hits during puberty or in early adulthood, not in late middle age. It also normally progresses very slowly, over many years or even decades. Often it can be controlled with treatment. The most common treatment is hard contact lenses. The ultimate treatment is corneal transplant, but this is done when no other treatment can offer acceptable vision correction.

There is a family history, so that increases my risk. My brother’s experience with the disease was anything but ordinary, so that concerns me. He was diagnosed in his thirties, so younger than I am now by a good bit, but much older than average. He also went from diagnosis to transplant in four years, with all the normal treatments happening and rapidly failing along the way.

I’m in the early stages. My usual eye doctor couldn’t see anything abnormal in what they call the slit test, which is how it is normally first noticed. He also said that once symptoms present, it is rare that the patient’s vision can be corrected to 20/20. Mine can. The problem is that said correction varies almost daily.

There is a newish treatment that halts or at least significantly slows the progression of the disease, but doesn’t repair damage that has already occurred. Doc is trying to justify it to the insurance company, but he’s not sure that he has enough data yet. Meanwhile, the damage continues. Cost is $5K per eye. Might just max out a credit card and tell them to do it anyway, just to prevent more damage. I’ll wait a little while to see what Blue Cross says.

2020 really sucks.

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4 Responses to Going Blind

  1. Jin Chiang says:

    Aged five years after reading this post. đŸ˜¦

    If you decide to proceed with the treatment out of pocket, let me know. Will whistle up the boys to chip in.

  2. Larry says:

    Man that sucks. Sorry I haven’t been keeping in contact lately. If there is anything I can do for you shoot me a message.

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