I did not update the blog as soon as I had hoped unfortunately.
I spent a good deal of time thinking about the approach that I would take towards the topic of Corneal Dystrophy and what it is.
Ultimately after much thought being put into it, I have decided on skipping the clinical approach completely and going for the personal one.
What is Corneal Dystrophy for a person who has it?
I didn’t know what it was until 2011. What I knew up to that point was that my mother and I, along with my baby brother, suffered from episodes of eye inflammation and infections nearly every winter. As far back as I could remember, my mom never had good eyesight.
Up until the age of 18, my eyesight didn’t trouble me a lot. However, I began having episodes of my eyes becoming red and painful and closing for periods of up to a week when I began med school.
My doctors then were baffled and thought it was simply a viral infection (even though bloodwork didn’t show any viruses).
I don’t blame them, very few people know about this condition. Its inherited and a progressive degenerative disease. Meaning that as time goes on it gets worse.
For myself, right now, Corneal Dystrophy means having eyes that feel dry most of the time. This is accompanied with vision that is not as good as it used to be: no longer being able to drive at night, having trouble seeing faces in a corridor, vision that starts off ok in the morning but as the day goes on gets worse until even reading becomes troublesome.
There are different issues with having such a condition, mainly that it hampers what I can do.
I absolutely must avoid places with air-conditioning (in the car, intensive care units, offices) and have to constantly use eye drops to “hydrate” my sclera and corneas. Driving long distances is also not possible, as is most activity that requires a focused stare with less blinking (watching movies for example)
Dry and windy weather are a bane as well.
Is it curable? Does it get better?
Eventually, I will have to get corneal transplants. Because what I have is congenital though, not acquired, the dystrophy comes back. Then another transplant is done. Each transplant has a risk of rejection and with it a risk of permanent blindness in that eye. Which is why it’s a treatment option to be used when my quality of life is poor.
On the bright side, having corneal dystrophy has allowed me to branch out into using my other senses. I’m now much more into music, listening to podcasts and audiobooks.
I’m still exploring other hobbies as well.
Most of my focus is into ensuring that my eyes are protected as much as I can, while enjoying as much as I can with the eyes I have now.
A support group for people with corneal dystrophy is accessible on Facebook (I will share the link below), the group isn’t very active (about a post every other week), probably because many of the posters have vision problems. I’m able to have a greater presence online, because from what I can tell my flareups are less frequent than most people.
Its not fun talking about what affects you personally, but I think its important especially for the young people out there who are suffering from Corneal Dystrophy and need to find out more about it and about fellow sufferers.
I understand the frustration and anger they may feel. I hope that this post is comforting for them. Please email me if you have any questions.
#cornealdystrophy #hopeforsight
Links:
1) Facebook Support Group: https://www.facebook.com/groups/hopeforsight/
2) American Academy of Ophthalmology: https://www.aao.org/eye-health/diseases/corneal-dystrophies
I spent a good deal of time thinking about the approach that I would take towards the topic of Corneal Dystrophy and what it is.
Ultimately after much thought being put into it, I have decided on skipping the clinical approach completely and going for the personal one.
What is Corneal Dystrophy for a person who has it?
I didn’t know what it was until 2011. What I knew up to that point was that my mother and I, along with my baby brother, suffered from episodes of eye inflammation and infections nearly every winter. As far back as I could remember, my mom never had good eyesight.
Up until the age of 18, my eyesight didn’t trouble me a lot. However, I began having episodes of my eyes becoming red and painful and closing for periods of up to a week when I began med school.
My doctors then were baffled and thought it was simply a viral infection (even though bloodwork didn’t show any viruses).
I don’t blame them, very few people know about this condition. Its inherited and a progressive degenerative disease. Meaning that as time goes on it gets worse.
For myself, right now, Corneal Dystrophy means having eyes that feel dry most of the time. This is accompanied with vision that is not as good as it used to be: no longer being able to drive at night, having trouble seeing faces in a corridor, vision that starts off ok in the morning but as the day goes on gets worse until even reading becomes troublesome.
There are different issues with having such a condition, mainly that it hampers what I can do.
I absolutely must avoid places with air-conditioning (in the car, intensive care units, offices) and have to constantly use eye drops to “hydrate” my sclera and corneas. Driving long distances is also not possible, as is most activity that requires a focused stare with less blinking (watching movies for example)
Dry and windy weather are a bane as well.
Is it curable? Does it get better?
Eventually, I will have to get corneal transplants. Because what I have is congenital though, not acquired, the dystrophy comes back. Then another transplant is done. Each transplant has a risk of rejection and with it a risk of permanent blindness in that eye. Which is why it’s a treatment option to be used when my quality of life is poor.
On the bright side, having corneal dystrophy has allowed me to branch out into using my other senses. I’m now much more into music, listening to podcasts and audiobooks.
I’m still exploring other hobbies as well.
Most of my focus is into ensuring that my eyes are protected as much as I can, while enjoying as much as I can with the eyes I have now.
A support group for people with corneal dystrophy is accessible on Facebook (I will share the link below), the group isn’t very active (about a post every other week), probably because many of the posters have vision problems. I’m able to have a greater presence online, because from what I can tell my flareups are less frequent than most people.
Its not fun talking about what affects you personally, but I think its important especially for the young people out there who are suffering from Corneal Dystrophy and need to find out more about it and about fellow sufferers.
I understand the frustration and anger they may feel. I hope that this post is comforting for them. Please email me if you have any questions.
#cornealdystrophy #hopeforsight
Links:
1) Facebook Support Group: https://www.facebook.com/groups/hopeforsight/
2) American Academy of Ophthalmology: https://www.aao.org/eye-health/diseases/corneal-dystrophies
Soliloquys 
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