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Monday, October 15, 2012

Ocular Histoplasmosis

A different sort of post today.

These are photos of my left eye. I have a rare eye disease called Presumed Ocular Histoplasmosis Syndrome (POHS). The photos show spots of scarring in my left eye. While this eye disease can be treated as it progresses, there is no cure. I have no central vision in my left eye. I have scarring in my right eye, but the scarring there has not started bleeding so, other than a blind spot, I've never had to endure the injections in my right eye that they use to treat my left eye. I only need the injections when the blood vessels in the scarring, left from the histoplasmosis years ago, begin to bleed again. This disease leads to legal blindness. No cure, only treatment. Not a good diagnosis to get.

I'm posting on this today as I'm part of an online group
of about 150 people from around the world who have this disease. One of them, a young woman, just became legally blind. The disease gets almost no research money as it's rare. I understand that those diseases that affect many get the money. It's just very sad that there a group of us slowly going blind and the best our doctors can do is experiement as no one knows the best way to treat it. I have a fantastic doctor and I have every confidence that he keeps up with the latest information on this disease. Sadly, there is so little information  To all my friends with this disease, I wish you the best and may a cure be found before it's too late for more of us.

So I'll keep taking photos
and depending on my camera
to be able to see
better than I can.





This last photo shows a group of photos taken of my left eye, put together to show more of a complete picture of my eye.



2 comments:

  1. Hi there! glad to drop by your page and found these very interesting and informative stuff. Thanks for sharing, keep it up!

    - ocular inflammatory research

    ReplyDelete
  2. Thanks Cheys. Do you have ocular histoplasmosis or just curious about it? Hoping it's just curiousity. Thanks for looking at my blog!

    ReplyDelete

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