5 ms·

In case anyone is curious the disease is called Keratoconus and it's very rare. I have had the CXL procedure but alas was too late to make any big difference.

soco 5y ago
I have keratoconus too and I wear hard lenses as the OP. While they are indeed inconvenient (we could write an article only about that, right), I make the daily effort to support them - unless it's an allergy day then lol no way. I never heard of CXL until now, so I'll have to look into it, thank you for the hint! Maybe the docs never mentioned it to me also because my numbers are stable for the last fifteen years...
- mouzogu 5y ago
  I had CXL 3 years ago. The idea is to prevent progression. But it depends on your age and overall stability/thickness of your cornea.
gdebel 5y ago
Hi, I'm an ophthalmologist, corneal specialist (and regular HN reader). I just would like to draw your attention to the absolute necessity to avoid any eye rubbing. This point is very often ignored by some colleagues, for various reasons. CXL will never increase your visual acuity, it is aimed at stabilizing the evolution (it is a controversial procedure). The most effective thing to stabilize your pathology is to avoid any eye rubbing. Please inform yourself about scleral lenses, too. Write me if you need to.
- kuroguro 5y ago
  Yeah, never rub. I also saw a study semi-recently about sleeping on stomach as a possible cause as it increases the pressure on eyes during sleep. Not sure how accurate the study is but I did used to do it a lot.
- mouzogu 5y ago
  Thanks for your response. I had my CXL procedure 3 years ago and afaik I have avoided eye-rubbing completely since then. I also wear scleral lenses but I can only get 8 hours at best on a good day due to eye dryness. Even with lubricating eye drops. 8 hours but I would have to remove them once or twice a day, which is a whole other rigamarole.
- cipher_system 5y ago
  Shit, I have keratoconus with rigid lenses and been constantly rubbing my eyes for more than 10 years now. Been to two ophthalmologist and a couple opticians and no one ever mentioned that. Thanks for the warning! I'll ask my ophthalmologist about scleral lenses or maybe hybrid or K-rose lenses as some other comments mentioned.
  - gdebel 5y ago
    This is infuriating. This is why I always comment when I see people talking about KC on HN (guess what? There is a lot. I won't do the research but I'm almost sure that this is the most frequent pathologie people here talk about. Lots of computers, lots of concentration, lots of eye dryness,lots of eye rubbing). There is more and more evidence to support the fact that KC is purely induced by eye rubbing. Don't rub your eyes !
    - interestica 5y ago
      Can you point to some of the most relevant/recent research?
      - gdebel 5y ago
        Yes, of course. A simple Pubmed query will bring a lot of occurrences : https://pubmed.ncbi.nlm.nih.gov/?term=Keratoconus+eye+rubbing https://pubmed.ncbi.nlm.nih.gov/?term=Keratoconus+eye+rubbin... For a complete argumentation and discussion about the case for the role of eye rubbing in keratoconus genesis, please look at this website : https://defeatkeratoconus.com/ https://defeatkeratoconus.com/ (Disclaimer: I work closely with one of the main proponent of the eye rubbing hypothesis. However, please believe that I don't have any conflict of interest in this topic. I don't have anything to gain in raising awareness about this problem, except feeling that I'm doing something right)
        interestica 5y ago
        Much appreciated! I certainly question it from personal experience, but I'm very interested to know more.
jbverschoor 5y ago
Rarity numbers I found: 1 in 2.000 (0.05%) 1 in 1.500 (0.06%) 50-230 in 100.000 (0.05% - 0.23%) That doesn't seem very rare tbh.
- mouzogu 5y ago
  Yes, perhaps not very rare but still rare enough that I feel unlucky :(
dear_srik 5y ago
Hey I have Keratoconus too.. I am using the K-Rose lenses RIgid Gas Peremable ones, they are quite comfortable after a week of use. The K-Rose lenses are engineered to exact curvature of the problematic cornea, so the fit is perfect and no accumulation of tears inderneath Overall, though bit expensive I would say they helped.
- mouzogu 5y ago
  Thanks, I will look into that brand. The one I use now is from the UK. They're fairly comfortable but the issue comes from dryness mostly.
interestica 5y ago
Keratoconus here too. CXL is more to stop any progression and best when performed early. For the longest time I unexpectedly got by with soft toric lenses. I'm currently doing well with "hybrid" lenses from Synergeyes. They're hard in the middle with a soft skirt. So, a bit more comfortable than other options. My biggest annoyance is the removal procedure. But, some days I have better than 20/20.
jimohalloranau 5y ago
I’ve lived with Kerotoconus for the last 20 years, and professional developer for 25+ years. I’ve worn hard contact lenses for most of that time (various types), and had a corneal graft (transplant) in one eye about 4 years ago. I’m primarily a back end developer, and was contemplating a career change before surgery. Some thoughts based on my experience: * Hard contact lens wear takes some getting used to. Stay with it if you possibly can. * The difference between good and bad contacts is night and day. Subtle differences can make a world of difference in comfort. * Find an optometrist who has expertise in kerotoconus/fitting hard lenses, and who will try as many revisions as it takes to get it right. I can go 16 hours straight every day with my lenses, no worries. * Hydration can affect lens comfort. Drink plenty of fluid, especially in hot weather. * Ambient light levels also have a big effect, your room can be over lit without being obviously too bright. Too much light will leave your eyes feeling dry. * To reduce light/glare I would dare mode all the things. Including using Chrome extensions to invert colours in Google Docs. On bad days, for me, a white screen was like staring into the sun. Sounds like this is less of an issue for you though. * Good quality monitors are essential. I like IPS displays, they seem to make great colours and contrast without putting out a lot of light. Spend time setting them up to your liking. I like the brightness as low as I can get it without loosing too much contrast. Your employer should be buying these for you, but I would spend my own money if I had to. It’s that important to me. * A graft/transplant is pretty much the last option. The recovery takes a couple of months, but for me the difference in vision is dramatic. For professionals dependent on vision like ourselves the fact that the surgeon can’t give any indication of your vision afterwards is a bit scary. * If you’re in South Australia, I’m happy to give you the names of my optom and surgeon. Both are amazing. * After surgery I’ve deferred thoughts of a career change, my vision is good enough that I feel I can continue “hands on” development for a number of years yet. * “Hands on” above might give you a hint as to what I was thinking of in terms of alternate options. Look for things where your skills and experience can be utilised, but without full time screen work. Project Management, Team Leadership, etc might be worth considering. Teaching or Mentoring are other options to explore. * It never occurred to me, but accessibility consulting would be an excellent idea. * The degeneration in your vision slows down eventually. I was diagnosed in my early 20s and went downhill rapidly in my late 20s. My eyesight changed a somewhat through my 30s and has been pretty stable since I turned 40. From what I understand, this is pretty typical, but is scary AF when your young and “going blind” though. I was really struggling with vision prior to surgery. I was fortunate to be able to discuss my difficulties with my employer. He said something at the time that stuck with me. He said that he’d always valued the thought (design/architecture) that went into everything I built. And that the way that had been captured in the past was with fingers on keyboard doing the building. We just needed to find a different way to do that going forwards. Which might have meant working with the juniors on our team to build their skills instead. Think about what your strengths and experience are and other ways to harness those skills.

soco 5y ago

I have keratoconus too and I wear hard lenses as the OP. While they are indeed inconvenient (we could write an article only about that, right), I make the daily effort to support them - unless it's an allergy day then lol no way. I never heard of CXL until now, so I'll have to look into it, thank you for the hint! Maybe the docs never mentioned it to me also because my numbers are stable for the last fifteen years...

mouzogu 5y ago
I had CXL 3 years ago. The idea is to prevent progression. But it depends on your age and overall stability/thickness of your cornea.

gdebel 5y ago

Hi, I'm an ophthalmologist, corneal specialist (and regular HN reader). I just would like to draw your attention to the absolute necessity to avoid any eye rubbing. This point is very often ignored by some colleagues, for various reasons. CXL will never increase your visual acuity, it is aimed at stabilizing the evolution (it is a controversial procedure). The most effective thing to stabilize your pathology is to avoid any eye rubbing. Please inform yourself about scleral lenses, too. Write me if you need to.

kuroguro 5y ago
Yeah, never rub. I also saw a study semi-recently about sleeping on stomach as a possible cause as it increases the pressure on eyes during sleep. Not sure how accurate the study is but I did used to do it a lot.
mouzogu 5y ago
Thanks for your response. I had my CXL procedure 3 years ago and afaik I have avoided eye-rubbing completely since then. I also wear scleral lenses but I can only get 8 hours at best on a good day due to eye dryness. Even with lubricating eye drops. 8 hours but I would have to remove them once or twice a day, which is a whole other rigamarole.
cipher_system 5y ago
Shit, I have keratoconus with rigid lenses and been constantly rubbing my eyes for more than 10 years now. Been to two ophthalmologist and a couple opticians and no one ever mentioned that. Thanks for the warning! I'll ask my ophthalmologist about scleral lenses or maybe hybrid or K-rose lenses as some other comments mentioned.
- gdebel 5y ago
  This is infuriating. This is why I always comment when I see people talking about KC on HN (guess what? There is a lot. I won't do the research but I'm almost sure that this is the most frequent pathologie people here talk about. Lots of computers, lots of concentration, lots of eye dryness,lots of eye rubbing). There is more and more evidence to support the fact that KC is purely induced by eye rubbing. Don't rub your eyes !
  - interestica 5y ago
    Can you point to some of the most relevant/recent research?
    - gdebel 5y ago
      Yes, of course. A simple Pubmed query will bring a lot of occurrences : https://pubmed.ncbi.nlm.nih.gov/?term=Keratoconus+eye+rubbing https://pubmed.ncbi.nlm.nih.gov/?term=Keratoconus+eye+rubbin... For a complete argumentation and discussion about the case for the role of eye rubbing in keratoconus genesis, please look at this website : https://defeatkeratoconus.com/ https://defeatkeratoconus.com/ (Disclaimer: I work closely with one of the main proponent of the eye rubbing hypothesis. However, please believe that I don't have any conflict of interest in this topic. I don't have anything to gain in raising awareness about this problem, except feeling that I'm doing something right)
      - interestica 5y ago
        Much appreciated! I certainly question it from personal experience, but I'm very interested to know more.

jbverschoor 5y ago

Rarity numbers I found: 1 in 2.000 (0.05%) 1 in 1.500 (0.06%) 50-230 in 100.000 (0.05% - 0.23%) That doesn't seem very rare tbh.

mouzogu 5y ago
Yes, perhaps not very rare but still rare enough that I feel unlucky :(

dear_srik 5y ago

Hey I have Keratoconus too.. I am using the K-Rose lenses RIgid Gas Peremable ones, they are quite comfortable after a week of use. The K-Rose lenses are engineered to exact curvature of the problematic cornea, so the fit is perfect and no accumulation of tears inderneath Overall, though bit expensive I would say they helped.

mouzogu 5y ago
Thanks, I will look into that brand. The one I use now is from the UK. They're fairly comfortable but the issue comes from dryness mostly.

interestica 5y ago

Keratoconus here too. CXL is more to stop any progression and best when performed early. For the longest time I unexpectedly got by with soft toric lenses. I'm currently doing well with "hybrid" lenses from Synergeyes. They're hard in the middle with a soft skirt. So, a bit more comfortable than other options. My biggest annoyance is the removal procedure. But, some days I have better than 20/20.

jimohalloranau 5y ago

I’ve lived with Kerotoconus for the last 20 years, and professional developer for 25+ years. I’ve worn hard contact lenses for most of that time (various types), and had a corneal graft (transplant) in one eye about 4 years ago. I’m primarily a back end developer, and was contemplating a career change before surgery. Some thoughts based on my experience: * Hard contact lens wear takes some getting used to. Stay with it if you possibly can. * The difference between good and bad contacts is night and day. Subtle differences can make a world of difference in comfort. * Find an optometrist who has expertise in kerotoconus/fitting hard lenses, and who will try as many revisions as it takes to get it right. I can go 16 hours straight every day with my lenses, no worries. * Hydration can affect lens comfort. Drink plenty of fluid, especially in hot weather. * Ambient light levels also have a big effect, your room can be over lit without being obviously too bright. Too much light will leave your eyes feeling dry. * To reduce light/glare I would dare mode all the things. Including using Chrome extensions to invert colours in Google Docs. On bad days, for me, a white screen was like staring into the sun. Sounds like this is less of an issue for you though. * Good quality monitors are essential. I like IPS displays, they seem to make great colours and contrast without putting out a lot of light. Spend time setting them up to your liking. I like the brightness as low as I can get it without loosing too much contrast. Your employer should be buying these for you, but I would spend my own money if I had to. It’s that important to me. * A graft/transplant is pretty much the last option. The recovery takes a couple of months, but for me the difference in vision is dramatic. For professionals dependent on vision like ourselves the fact that the surgeon can’t give any indication of your vision afterwards is a bit scary. * If you’re in South Australia, I’m happy to give you the names of my optom and surgeon. Both are amazing. * After surgery I’ve deferred thoughts of a career change, my vision is good enough that I feel I can continue “hands on” development for a number of years yet. * “Hands on” above might give you a hint as to what I was thinking of in terms of alternate options. Look for things where your skills and experience can be utilised, but without full time screen work. Project Management, Team Leadership, etc might be worth considering. Teaching or Mentoring are other options to explore. * It never occurred to me, but accessibility consulting would be an excellent idea. * The degeneration in your vision slows down eventually. I was diagnosed in my early 20s and went downhill rapidly in my late 20s. My eyesight changed a somewhat through my 30s and has been pretty stable since I turned 40. From what I understand, this is pretty typical, but is scary AF when your young and “going blind” though. I was really struggling with vision prior to surgery. I was fortunate to be able to discuss my difficulties with my employer. He said something at the time that stuck with me. He said that he’d always valued the thought (design/architecture) that went into everything I built. And that the way that had been captured in the past was with fingers on keyboard doing the building. We just needed to find a different way to do that going forwards. Which might have meant working with the juniors on our team to build their skills instead. Think about what your strengths and experience are and other ways to harness those skills.