Hi, I am really interested in reading this conversation, as I have keratoconus and had CXL surgery about ten years ago, and am very happy with it. The CXL stopped the keratoconus progressing and I only need to wear glasses instead of the more invasive things other patients mention (contact lenses, corneal grafts and transplants, etc).
It would be good if this intervention to convince patients to cease eye rubbing was more common in keratoconus patients. There is often a delay of several months between when keratoconus is suspected or diagnosed and CXL is carried out (in my case I had to wait 6 months in one eye and 9 months in the other, during which time it got a bit worse).
About eye rubbing, yes there should be more awareness of it! In practical terms, I would recommend that everyone tries wearing an eye-mask when they’re asleep (I recently bought this one, and I'm happy with it https://www.amazon.co.uk/gp/product/B07DW32QYJ ). This is because it's more difficult to notice and prevent yourself from rubbing your eyes when you're half-asleep.
There are several reasons why I like wearing an eye mask while in bed, and some even apply to people who don’t have keratoconus:
1. It stops me rubbing my eyes when I'm in bed.
1. It might stop allergens getting into my eyes when I'm asleep, for example I notice much less rheum on my eyes when I wake up in the morning. When I’m in bed is when I notice that my allergies are worst.
3. It helps me sleep better, it's like having blackout curtains in my room.
4. If I want to get up in the middle of the night, I will be able to see better in the dark.
It would be good if this intervention to convince patients to cease eye rubbing was more common in keratoconus patients. There is often a delay of several months between when keratoconus is suspected or diagnosed and CXL is carried out (in my case I had to wait 6 months in one eye and 9 months in the other, during which time it got a bit worse).
About eye rubbing, yes there should be more awareness of it! In practical terms, I would recommend that everyone tries wearing an eye-mask when they’re asleep (I recently bought this one, and I'm happy with it https://www.amazon.co.uk/gp/product/B07DW32QYJ ). This is because it's more difficult to notice and prevent yourself from rubbing your eyes when you're half-asleep.
There are several reasons why I like wearing an eye mask while in bed, and some even apply to people who don’t have keratoconus: 1. It stops me rubbing my eyes when I'm in bed. 1. It might stop allergens getting into my eyes when I'm asleep, for example I notice much less rheum on my eyes when I wake up in the morning. When I’m in bed is when I notice that my allergies are worst. 3. It helps me sleep better, it's like having blackout curtains in my room. 4. If I want to get up in the middle of the night, I will be able to see better in the dark.