6 ms·

Solo Eye Drop Treatment in Development for Keratoconus

49 points by miduil 8y ago

miduil 8y ago
Thank you @mods for re-upping my submission! Judging by the Keratoconus sub-reddit [reddit], there are probably plenty of undiagnosed people out there - maybe not even noticing their eye-sight is constrained. Keratoconus is a disorder which describes the middle cornea to thin, bulge outward, and form a rounded cone shape, causing plenty of issues - most noticeably double vision, astigmatism and red dry eyes. According to Wikipedia it affects about 1 in 2000 people. The disease can progress in irregular speed and so far I understand only Corneal Cross-Linking (CXL) OPs showed positive results in reducing/stopping the progression, but it's not side-effect free and at least for me the CXL was a rather traumatic experience and it renders your eye-sight pretty bad for the next weeks and even a year after I could still notice difference in my vision. Having a Eye Drop instead of CXL would mean more people could be cured and the cure would be way less invasive. So this news is a big deal for everyone who's affected and didn't had CXL yet. If you notice double vision on high-contrast sharp images such as white text on black background, chances are you are affected. [0], [1] [0]: https://en.wikipedia.org/wiki/File:Kc_simulation.jpg https://en.wikipedia.org/wiki/File:Kc_simulation.jpg [1]: https://en.wikipedia.org/wiki/File:Kc_simulation2.png https://en.wikipedia.org/wiki/File:Kc_simulation2.png [reddit]: https://www.reddit.com/r/Keratoconus/ https://www.reddit.com/r/Keratoconus/
- kstrauser 8y ago
  Wait, what? Your first link is exactly how I see things. I even photoshopped this for my optometrist to show her what oncoming car lights look like at night. I wear glasses so I've had any number of people examine my eyeballs over the years. Is this something I should worry about, or should I expect that someone would have caught it by now?
  - kmm 8y ago
    I have similar complaints and no optometrist has been of help. It's really annoying at night, or simply when watching TV, the subtitles are always subtly doubled. I did get a corneal topography scan a few years ago, and they ruled out keratoconus. Perhaps you can ask for it, it takes like 5 seconds.
    - kstrauser 8y ago
      It's slightly annoying during the day, but I can write software without my glasses. The worst time is while driving at night, when I can't tell which pair of oncoming headlights is the one I'm actually supposed to avoid.
  - miduil 8y ago
    I'd say if you haven't got checked for this (and if it hasn't been discussed yet) it's advisable to ask for getting a check. It's easy to test if they have the right tools available and I'm not sure how many optometrists are aware of Keratoconus. Back then it felt like poor luck that they've diagnosed me.
  - adrianmacneil 8y ago
    If you're in or near SF I recommend looking up optometrist Dr. David Stamper, he specializes in keratoconus and similar issues.
jorge-d 8y ago
I was diagnosed with an early stage Keratoconus a few months ago. It appears that rubbing your eyes is one of the main factors[1]. The lack of warning about it is quite concerning as I learned how bad rubbing your eyes was when I got the diagnostic. [1] https://www.gatinel.com/en/recherche-formation/keratocone-2/frottements-oculaires-cause-sine-qua-non-keratocone/ https://www.gatinel.com/en/recherche-formation/keratocone-2/...
- andrewingram 8y ago
  It’s also very prevalent in Kenya, where for some reason people have a lot of allergies and habitual eye-rubbing is very common.
- maxerickson 8y ago
  Not rubbing eyes is folk knowledge in my family, but I guess it's more about scratching the eyeball than anything about Keratoconus.
- watchdogtimer 8y ago
  Thanks for posting about this. The tear ducts on my eyelids often get clogged, and my optometrist recommended I sometimes __gently__ rub my eyelids to unblock them. I now see why it should be done gently!
- EvanAnderson 8y ago
  I was diagnosed at 24. I has very bad animal allergies and hay fever when I was a child and frequently rubbed my eyes (often to the point they would swell shut).
zimablue 8y ago
If I've interpreted the article correctly, this is to try and duplicate the effect of cross linking, which is a preventative step that isn't useful once your keratoconus has stopped developing. If I've interpreted right, if you're past your early twenties this probably isn't relevant to you
- andrewingram 8y ago
  That doesn’t seem right, I was diagnosed in my early twenties, but the condition was continuing to progress into my thirties. At which point they decided that CXL was necessary to prevent my cornea from eventually rupturing. The reason they didn’t do it sooner was at the time improvement in contact lens technology was outpacing the progression of the disease (or so they said).
nness 8y ago
As someone who has undergone keratoplasty (corneal graft) to treat fairly progressed Keratoconus, news like this fills me with the hope that the disease will eventually disappear and no one will need to go through the same physical and emotional discomfort.
- andrewingram 8y ago
  How was the graft? I had CXL last year, and the pain was pretty excruciating. But i'm now scheduled in for a graft and the consultant said that in terms of pain and discomfort, it's nowhere near as bad.
  - tnjm 8y ago
    I had a deep lamellar graft 15 years ago, for keratoconus, and it wasn't painful, just uncomfortable for a while. The followup appointments also involved some discomfort, but were fine. As with any transplant, I'd say it might be helpful to prepare yourself for the fact you'll have someone else's body part (I'll be celebrating my cornea's centenary before that long). And don't have huge expectations for the result -- I can't comfortably read a book with my operated eye, though no doubt the vision would be acceptable with contacts. They're such a pain and the vision in my unoperated eye is still good enough that it's better to rely mostly on that eye than bother with them. I still won't drive in the dark, won't play contact sports and my eyes get tired fairly easily, but overall it was a big win and I'd go for it again in a heartbeat. Good luck!
    - andrewingram 8y ago
      Thanks, I hadn't given the whole "someone else's body part" aspect much consideration, but I imagine it does feel a bit odd. They're going to be aiming for a partial thickness graft, which is apparently much harder to do, but if they pull it off there's much lower risk of complications. Surgeon says his rate of achieving noticeable improvement in vision is 95% compared to the average of 50%.
striking 8y ago
Ad-free: http://archive.is/Oil95 http://archive.is/Oil95
amelius 8y ago
Attempt at TL;DR. I'm not a biologist, but I gather from the article that they found the drug this way. Please correct me if I'm wrong. - From a large group of people with the symptoms, they sequenced the DNA, and looked for patterns. It was found that the LOX gene is commonly affected in these people, leading to a LOX enzyme that is less efficient. - The LOX enzyme is known to depend on the presence of a bunch of molecules (aka cofactors). If the presence of one or more cofactors is boosted, then even a compromised LOX enzyme can still be made to function efficiently in a lot of cases. - The substance they found is one of these cofactors. The formulation was probably refined so that uptake in the eyes is ensured. Note: the LOX enzyme has more roles in the body than in the eye, for example it plays a role in the skin. So I would assume that people with these specific eye symptoms are likely to have also skin problems. Perhaps the presence of these skin problems could predict whether the therapy could be successful (?) See https://en.wikipedia.org/wiki/Lysyl_oxidase#Biological_function https://en.wikipedia.org/wiki/Lysyl_oxidase#Biological_funct...
danellis 8y ago
My keratoconus is quite mild. It's the kind of thing your brain mostly compensates for I'm ideal conditions, but when reading white-on-black, reading text at a distance and especially driving at night, it does make things more difficult. Apart from all that going away, it would be nice to be able to wear those soft, jelly-like contact lenses that feel so comfortable.
interestica 8y ago
This story is true. I was diagnosed about 15 years ago. Eyes (mostly right eye) were getting progressively worse. Reached the point where soft (toric xr) lenses were no longer working. I was going to get fitted for hard lenses in the coming week. I stayed at a friend's house. I had an allergic reaction to her cat. My eyes got severely swollen. The next day, I could see with my soft lenses again. Optometrist didn't believe me. Until I went in and she tested. My eyes had been 'relatively' stable since that...but have recently started to get worse again. I always thought it was something to explore scientifically. I had another eye doc say it was all in my head. (If only one could will themselves to see better...). The best treatment when I was diagnosed was the implantation of plastic rings into the eye to change its shape. I always suspected that there could have been a shape change. Or maybe just fortunately-placed deterioration of my corneas from the reaction.

49 points by miduil 8y ago

Thank you @mods for re-upping my submission! Judging by the Keratoconus sub-reddit [reddit], there are probably plenty of undiagnosed people out there - maybe not even noticing their eye-sight is constrained. Keratoconus is a disorder which describes the middle cornea to thin, bulge outward, and form a rounded cone shape, causing plenty of issues - most noticeably double vision, astigmatism and red dry eyes. According to Wikipedia it affects about 1 in 2000 people. The disease can progress in irregular speed and so far I understand only Corneal Cross-Linking (CXL) OPs showed positive results in reducing/stopping the progression, but it's not side-effect free and at least for me the CXL was a rather traumatic experience and it renders your eye-sight pretty bad for the next weeks and even a year after I could still notice difference in my vision. Having a Eye Drop instead of CXL would mean more people could be cured and the cure would be way less invasive. So this news is a big deal for everyone who's affected and didn't had CXL yet. If you notice double vision on high-contrast sharp images such as white text on black background, chances are you are affected. [0], [1] [0]: https://en.wikipedia.org/wiki/File:Kc_simulation.jpg https://en.wikipedia.org/wiki/File:Kc_simulation.jpg [1]: https://en.wikipedia.org/wiki/File:Kc_simulation2.png https://en.wikipedia.org/wiki/File:Kc_simulation2.png [reddit]: https://www.reddit.com/r/Keratoconus/ https://www.reddit.com/r/Keratoconus/

kstrauser 8y ago
Wait, what? Your first link is exactly how I see things. I even photoshopped this for my optometrist to show her what oncoming car lights look like at night. I wear glasses so I've had any number of people examine my eyeballs over the years. Is this something I should worry about, or should I expect that someone would have caught it by now?
- kmm 8y ago
  I have similar complaints and no optometrist has been of help. It's really annoying at night, or simply when watching TV, the subtitles are always subtly doubled. I did get a corneal topography scan a few years ago, and they ruled out keratoconus. Perhaps you can ask for it, it takes like 5 seconds.
  - kstrauser 8y ago
    It's slightly annoying during the day, but I can write software without my glasses. The worst time is while driving at night, when I can't tell which pair of oncoming headlights is the one I'm actually supposed to avoid.
- miduil 8y ago
  I'd say if you haven't got checked for this (and if it hasn't been discussed yet) it's advisable to ask for getting a check. It's easy to test if they have the right tools available and I'm not sure how many optometrists are aware of Keratoconus. Back then it felt like poor luck that they've diagnosed me.
- adrianmacneil 8y ago
  If you're in or near SF I recommend looking up optometrist Dr. David Stamper, he specializes in keratoconus and similar issues.

jorge-d 8y ago

I was diagnosed with an early stage Keratoconus a few months ago. It appears that rubbing your eyes is one of the main factors[1]. The lack of warning about it is quite concerning as I learned how bad rubbing your eyes was when I got the diagnostic. [1] https://www.gatinel.com/en/recherche-formation/keratocone-2/frottements-oculaires-cause-sine-qua-non-keratocone/ https://www.gatinel.com/en/recherche-formation/keratocone-2/...

andrewingram 8y ago
It’s also very prevalent in Kenya, where for some reason people have a lot of allergies and habitual eye-rubbing is very common.
maxerickson 8y ago
Not rubbing eyes is folk knowledge in my family, but I guess it's more about scratching the eyeball than anything about Keratoconus.
watchdogtimer 8y ago
Thanks for posting about this. The tear ducts on my eyelids often get clogged, and my optometrist recommended I sometimes __gently__ rub my eyelids to unblock them. I now see why it should be done gently!
EvanAnderson 8y ago
I was diagnosed at 24. I has very bad animal allergies and hay fever when I was a child and frequently rubbed my eyes (often to the point they would swell shut).

zimablue 8y ago

If I've interpreted the article correctly, this is to try and duplicate the effect of cross linking, which is a preventative step that isn't useful once your keratoconus has stopped developing. If I've interpreted right, if you're past your early twenties this probably isn't relevant to you

andrewingram 8y ago
That doesn’t seem right, I was diagnosed in my early twenties, but the condition was continuing to progress into my thirties. At which point they decided that CXL was necessary to prevent my cornea from eventually rupturing. The reason they didn’t do it sooner was at the time improvement in contact lens technology was outpacing the progression of the disease (or so they said).

nness 8y ago

As someone who has undergone keratoplasty (corneal graft) to treat fairly progressed Keratoconus, news like this fills me with the hope that the disease will eventually disappear and no one will need to go through the same physical and emotional discomfort.

andrewingram 8y ago
How was the graft? I had CXL last year, and the pain was pretty excruciating. But i'm now scheduled in for a graft and the consultant said that in terms of pain and discomfort, it's nowhere near as bad.
- tnjm 8y ago
  I had a deep lamellar graft 15 years ago, for keratoconus, and it wasn't painful, just uncomfortable for a while. The followup appointments also involved some discomfort, but were fine. As with any transplant, I'd say it might be helpful to prepare yourself for the fact you'll have someone else's body part (I'll be celebrating my cornea's centenary before that long). And don't have huge expectations for the result -- I can't comfortably read a book with my operated eye, though no doubt the vision would be acceptable with contacts. They're such a pain and the vision in my unoperated eye is still good enough that it's better to rely mostly on that eye than bother with them. I still won't drive in the dark, won't play contact sports and my eyes get tired fairly easily, but overall it was a big win and I'd go for it again in a heartbeat. Good luck!
  - andrewingram 8y ago
    Thanks, I hadn't given the whole "someone else's body part" aspect much consideration, but I imagine it does feel a bit odd. They're going to be aiming for a partial thickness graft, which is apparently much harder to do, but if they pull it off there's much lower risk of complications. Surgeon says his rate of achieving noticeable improvement in vision is 95% compared to the average of 50%.

striking 8y ago

Ad-free: http://archive.is/Oil95 http://archive.is/Oil95

amelius 8y ago

Attempt at TL;DR. I'm not a biologist, but I gather from the article that they found the drug this way. Please correct me if I'm wrong. - From a large group of people with the symptoms, they sequenced the DNA, and looked for patterns. It was found that the LOX gene is commonly affected in these people, leading to a LOX enzyme that is less efficient. - The LOX enzyme is known to depend on the presence of a bunch of molecules (aka cofactors). If the presence of one or more cofactors is boosted, then even a compromised LOX enzyme can still be made to function efficiently in a lot of cases. - The substance they found is one of these cofactors. The formulation was probably refined so that uptake in the eyes is ensured. Note: the LOX enzyme has more roles in the body than in the eye, for example it plays a role in the skin. So I would assume that people with these specific eye symptoms are likely to have also skin problems. Perhaps the presence of these skin problems could predict whether the therapy could be successful (?) See https://en.wikipedia.org/wiki/Lysyl_oxidase#Biological_function https://en.wikipedia.org/wiki/Lysyl_oxidase#Biological_funct...

danellis 8y ago

My keratoconus is quite mild. It's the kind of thing your brain mostly compensates for I'm ideal conditions, but when reading white-on-black, reading text at a distance and especially driving at night, it does make things more difficult. Apart from all that going away, it would be nice to be able to wear those soft, jelly-like contact lenses that feel so comfortable.

interestica 8y ago

This story is true. I was diagnosed about 15 years ago. Eyes (mostly right eye) were getting progressively worse. Reached the point where soft (toric xr) lenses were no longer working. I was going to get fitted for hard lenses in the coming week. I stayed at a friend's house. I had an allergic reaction to her cat. My eyes got severely swollen. The next day, I could see with my soft lenses again. Optometrist didn't believe me. Until I went in and she tested. My eyes had been 'relatively' stable since that...but have recently started to get worse again. I always thought it was something to explore scientifically. I had another eye doc say it was all in my head. (If only one could will themselves to see better...). The best treatment when I was diagnosed was the implantation of plastic rings into the eye to change its shape. I always suspected that there could have been a shape change. Or maybe just fortunately-placed deterioration of my corneas from the reaction.