Community post
Dry Eye Neurotopic Keratitis
Good afternoon,
I'm curious to hear if anyone has suffered with NK due to severe dry eye post diagnosis and SCT.
I started with severe dry eye after my stem cell transplant. What I did not know is I also had NK, which muted the pain signals, kind of like neuropathy. I pushed through the blurred vision and light sensitivity, thinking dry eye is a benigne condition.
When my vision became bad enough, that it was interfering with my work and quality of life, I sought out a dry eye specialist.
I was immediately diagnosed with NK and told I was at high risk of losing my left eye. I had a Prokera placed that same day, which stayed on for a week. I then had a Prokera placed on my right eye the following week, and then another on my left the week after. All while waiting on an insurance approval for eye drops called Oxervate, which run $100k for an eight week supply.
I am on week three of my treatment and have not noticed any improvements. I brought this up to my oncologist, but was told it is not related to my cancer or treatment.
If anyone has had a similar experience or knows anyone that has, I would be interested to hear how you or they are doing.
Thank you!
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