Blind and Visually Impaired Community
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Advice for punctate inner choroidopathy (PIC)? (self.Blind)
submitted by pupper_opalus
Hi everyone, my husband was diagnosed with PIC in his early twenties. One of his eyes has a large permanent blind spot in and around his center of vision. Now we're in our late twenties and his other eye is starting to develop blind spots as well.
Does anyone here have experience with PIC? I'm looking for advice on how to support him and help him prevent future flare-ups. Since it is likely genetic, we are also trying to figure out if there is anything we should do for our children.
Does anyone here have experience with PIC? I'm looking for advice on how to support him and help him prevent future flare-ups. Since it is likely genetic, we are also trying to figure out if there is anything we should do for our children.
Elir_ 1 points 1y ago
Following this for a friend recently diagnosed. Any progress made? I’m currently trying to research specialists and there’s not much info out there.
pupper_opalus [OP] 1 points 1y ago
The only things his doctor has recommended are 1) routine and frequent eye exams, 2) looking at the Ansler grid every day to see if new wavy or blind spots pop up, and 3) immediate treatment with a steroid if a new flare-up starts.
DependentPollution84 1 points 1y ago
Hey! I was diagnosed with PIC earlier this year - want to extend my love to your husband. I have a similar pattern at the moment. I understand that the U.S. has a wildly different healthcare system to what I'm used to so I am unsure of how useful my personal experience will be when it comes to preventing future flare ups. At the moment, I'm on prednisone and I know that my doctor has discussed immunosuppressants in order to slow down and prevent any future flare ups. I've also had an injection into my eye to stop the growth of the inflammation which has caused my vision loss.
When it comes to your children and monitoring your husband, best bet is to get an Amsler grid and stick it on your fridge. I make sure the lines aren't bending any more than they usually are and if they are, I contact my doctor to let her know that there is a change in my vision. This is the most effective way to self monitor.
I really wish there was more I could say but unfortunately, I'm still learning to navigate this change in vision myself. Know that you have support from all the way in New Zealand!
When it comes to your children and monitoring your husband, best bet is to get an Amsler grid and stick it on your fridge. I make sure the lines aren't bending any more than they usually are and if they are, I contact my doctor to let her know that there is a change in my vision. This is the most effective way to self monitor.
I really wish there was more I could say but unfortunately, I'm still learning to navigate this change in vision myself. Know that you have support from all the way in New Zealand!
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