So… I joined a Facebook group

Sometime ago, I joined a Facebook group that supports patients with Glaucoma.

It is expertly moderated and helps patients cope with living with the disease.

It has taught me that sometimes, what I feel is important in helping the patient is not always what is important from the patient’s perspective. This is a lesson I keep learning over and over.

Some posts are inspiring.

One such post is about the experience of a healthy, fit 61 year old patient who discovered he has end stage glaucoma whilst out for a normal jog.

Please can you take a quick minute to read the post below? I think it may help you and your community see a different perspective.

“My name is XXXX, and I live in XXX. I am 61 years old and very healthy except that I have glaucoma that is advanced or end-stage, and is ruining my quality and enjoyment of life.

My glaucoma was caused by pseudoexfoliation. Apparently that was occurring within me for many months or several years before I knew anything was wrong. I’ve been a healthy person all my life and I take good care of myself. I had always had perfect vision. Because I had never experienced any trouble with my eyes, I never went to an eye doctor. On June 20th of last year, I was on my daily 4-mile hike when I came to a clearing and looked around to see that everything suddenly appeared very strange. The sky was too bright, and there was a kind of fogginess to the scene. The colors looked slightly bleached, and the contrast was wrong all over. Also, the very act of seeing had suddenly become very uncomfortable. I went to an eye doctor ASAP, and she determined that the fluid pressure within my eyes was very elevated. The visual field test revealed that I have large blind spots, and the damage extends well into my main field of view. The strangeness that I suddenly saw and felt that day in June has stayed with me every day since, all day long. I had been a lifelong lover of nature and beauty and art. I was an active and passionate landscape photographer. My world no longer looks beautiful to me, and I’ve had to put my photography on hold.

I need help. My current ophthalmologist is only concerned with prescribing drops to control my eye pressure. But I am having an increasingly difficult time functioning at all. I am often somewhat dizzy, as though I’m on a roller coaster, I feel as though I could fall down, there’s a general discomfort in my brain, and what my eyes are seeing is a bright foggy mess, as though someone is shining a flashlight in my eyes.”

The clear advice is to get checked for this silent thief of sight regularly because if identified early, Glaucoma treatment is very effective. Once vision is lost due to glaucoma, it cannot be recovered with current treatment options.

In the UK, we are fortunate enough to have an extensive network of community optometrists who can screen for Glaucoma. Please make use of this facility.