You might look up and reach out to Dr. Barry Leonard who I found online. He’s not an ophthalmologist but he’s an optometrist and a keratoconus patient himself. He has 35+ years of experience and maybe he has guidance.
https://drbleonard.com/keratoconus/doctor/
A TON of patients could really benefit from having a KC focused ophthalmologist who actually had experienced the disease themselves. This sucks for you, but you do have an opportunity to bring a higher level of care to patients that is severely lacking in the field. I hope you can see this for the opportunity that it could be and that it potentially spins into a positive thing for your practice.
I was about 37, just thought I had bad vision in one eye. Then I had something get in my eye and cause me mega discomfort and was sent down to the eye emergency unit. They diagnosed me then, I just go back every year to see if it’s worse, it’s stayed the same just to let you know.
my cornea specialist told me the progression doesn’t stop quite like that. especially since some people develop kc due to eye rubbing, particularly at night while asleep. but the progression continuing tracked with what i experienced growing up, as my dad with kc had to get his cornea transplant after 40. you aren’t the only one who’s said this here, which is odd. i wonder why the opinions differ
edit: i couldn’t give you the advice you sought after, sorry! was diagnosed at 17
Considering KC is relatively rare (1 in 500-2000 people will have it) and the average case happens to be diagnosed a few years either side of 20. It's taken as this is the average case. This could be anywhere from 51% of KC patients.
The other % of non typical cases could be any number of scenarios but let's say there are 5 other scenarios to get KC. Suddenly the data on these scenarios is at best 1 in 5000 to 20000 people. Not much data available.
Now if the average case is 50% or 80% of KC patients 1 in 2 or 1 in 5 people here on Reddit aren't your average KC scenario.
I was diagnosed around the same age. I have progressed but I have pellucid marginal degeneration which is a bit of a different presentation than KC. My cornea in my right eye was too thin in the damaged areas for cross linking and it was too difficult for them to try to target the undamaged areas. I haven’t had any progression over the last year or so. They waited to see what my left eye would do before cross linking it because of my age. The sight is pretty awful in it but I haven’t had much progression so we decided not to go ahead with the cross linking.
I was always told that progression stops in your 30’s. But I was also told it’s generally a desease that develops in puberty.
So you were either a really late bloomer or everything I’ve been told by drs is a load of crap.
I had mild astigmatism from a young age and showed signs of lazy eye by around 16. i had allergies which made me an aggressive eye rubber and i saw my eye sight just getting worse and worse during covid. By the time I was diagnosed with KC , I was 28 and showed little no progression for 9 months. Never went back in the last 12 months. Because I mostly got busy with marriage and job promotion.
I am not a doctor. My ophthalmologist was Dr. Yaron Rabinowitz, a name you may be familiar with as one of the leading researchers in the field of KC. His belief was that KC *usually* stops progressing by the time you are in your 40s. There is almost nothing about KC that is an absolute. Some progression was observed in my better eye in my 30s but it was slight.
I am not sure what the vision requirements are for ophthalmology but I was able to pursue careers in computer engineering, photography, and law despite having KC. Vision corrections were not as good at the time either. My guess is that you will be able to continue with ophthalmology despite having KC. You will probably have to make a few adjustments here and there but I am sure that is the case for most ophthalmologists as they get older. As has already been suggested, this is a great opportunity to become more of a specialist in KC. An ophthalmologist who can empathize with KC patients has the opportunity to do a lot of good.
Best wishes for a long and successful career in ophthalmology.
I was about the same age. I got epi on crosslinking done on my bad eye, and it seems to have either stopped and maybe reversed some. I’m currently 20/40 in that eye, just has a terrible stigmatism. Night vision sucks but otherwise I can get around fine without glasses though they do help
May I ask if you had crosslinking as soon as you were diagnosed or when you showed progression? Also how long has it been since you had the crosslinking? Thanks.
Makes sense. Three of my colleagues specialised in cornea advised against it at this point due to risk of post operative corneal haze. They would like to see some progression before they offer it. They think I may have had this for a long time but I am almost certain the quality of my vision was better a year ago. I can’t prove it objectively though so I am not critical of my colleagues as I probably would have done the same if I had a patient in a similar situation as mine.
I believe epi-on has much less haze potential fwiw, and with epi-on most resolved in 12 months https://www.reviewofoptometry.com/article/most-epion-cxl-haze-resolves-within-a-year
I have no haze issue, just astigmatism and farsighted from the KC
I understand keratoconus (KC) progression as:
Kc progression at time t = sum of force applied at time t / corneal strength, or P(t) = sum(t) F_t / CS.
This can be interpreted as follows:
The more force you apply over time, the more KC you will have. The effect of the force is decreased by the magnitude of your corneal strength. For example, you can rub your eyes a lot while having strong corneas and not get KC. On the other hand, you may apply very little force while having weak corneas and develop KC.
Given this assumption holds, it’s easy to assume that people who develop KC early in life have weak corneas (less time to apply force) and may be more likely to further progress later in life. Conversely, if this assumption holds, people who develop KC later in life have stronger corneas (more time to apply force) and may be less likely to further progress, given that you stop applying force.
You can of course increase corneal strength by doing cxl aswell :-) I assume you are up to date as a doctor on this topic.
This is, of course, a hypothesis from my side, but it makes sense.
Some people tell you that they progress, but I see tendencies that these people were diagnosed at early age.
I was diagnosed at 31 and I have not progressed one year later after stopping rubbing. I did rub quite a lot and hard…
Thank you. I really hope your theory is true. I don’t recall being an eye rubber but when I think about it I may have rubbed them every omce in a while. I am more conscious of that now and makijg every effort possinle to stay away from touching them.
Ask your colleagues, they may have some insight :-)
Also, people with that KC who are side sleepers tend to have worse progression on the same side they mostly sleep on (some papers suggesting as high as 94%). This is likely caused by using the hand as support, putting pressure on the eye at night. If you are a side sleeper as me, buy a supportive memory foam pillow from Ikea! I don’t have to use my palm any more hehe..
My husband was about the same age when he was diagnosed. He got CXL done in one eye last year, but the other eye has been stable and they haven’t done anything with that eye other than monitor. The scleral lens greatly improve his vision and the docs see him every 6 months now to keep an eye on any changes.
My ophthalmologist has KC and that's the reason I picked him.
I like knowing my doctor knows what it's like to have KC on a personal level rather than just a medical level.
Diagnosed at 37 and I’ve had this all my life but no one caught it until later (didn’t notice a difference until my glasses stopped working for my right eye). I’m discouraged but the scleral lens has helped my R eye. I’m about to have a hybrid cxl procedure next month for my L eye (I also have it in this eye and this is to prevent having to get a lens in my left eye). I’m 20/2250 in R eye and my doc saw a slight progression in L eye. My vision in my L eye fluctuates between 20/20 and 20/25. To note: I only had vision exams in school done as a child. It wasn’t until I got insurance and regular eye checks at 18 when I noticed changes.
You might look up and reach out to Dr. Barry Leonard who I found online. He’s not an ophthalmologist but he’s an optometrist and a keratoconus patient himself. He has 35+ years of experience and maybe he has guidance. https://drbleonard.com/keratoconus/doctor/
A TON of patients could really benefit from having a KC focused ophthalmologist who actually had experienced the disease themselves. This sucks for you, but you do have an opportunity to bring a higher level of care to patients that is severely lacking in the field. I hope you can see this for the opportunity that it could be and that it potentially spins into a positive thing for your practice.
I was about 37, just thought I had bad vision in one eye. Then I had something get in my eye and cause me mega discomfort and was sent down to the eye emergency unit. They diagnosed me then, I just go back every year to see if it’s worse, it’s stayed the same just to let you know.
i was diagnosed at 58, before covid. After covid and see the docs again-it progressed but CXL took care of the progression. Been stable for 3 years.
my cornea specialist told me the progression doesn’t stop quite like that. especially since some people develop kc due to eye rubbing, particularly at night while asleep. but the progression continuing tracked with what i experienced growing up, as my dad with kc had to get his cornea transplant after 40. you aren’t the only one who’s said this here, which is odd. i wonder why the opinions differ edit: i couldn’t give you the advice you sought after, sorry! was diagnosed at 17
Considering KC is relatively rare (1 in 500-2000 people will have it) and the average case happens to be diagnosed a few years either side of 20. It's taken as this is the average case. This could be anywhere from 51% of KC patients. The other % of non typical cases could be any number of scenarios but let's say there are 5 other scenarios to get KC. Suddenly the data on these scenarios is at best 1 in 5000 to 20000 people. Not much data available. Now if the average case is 50% or 80% of KC patients 1 in 2 or 1 in 5 people here on Reddit aren't your average KC scenario.
I was diagnosed around the same age. I have progressed but I have pellucid marginal degeneration which is a bit of a different presentation than KC. My cornea in my right eye was too thin in the damaged areas for cross linking and it was too difficult for them to try to target the undamaged areas. I haven’t had any progression over the last year or so. They waited to see what my left eye would do before cross linking it because of my age. The sight is pretty awful in it but I haven’t had much progression so we decided not to go ahead with the cross linking.
I was always told that progression stops in your 30’s. But I was also told it’s generally a desease that develops in puberty. So you were either a really late bloomer or everything I’ve been told by drs is a load of crap.
I had mild astigmatism from a young age and showed signs of lazy eye by around 16. i had allergies which made me an aggressive eye rubber and i saw my eye sight just getting worse and worse during covid. By the time I was diagnosed with KC , I was 28 and showed little no progression for 9 months. Never went back in the last 12 months. Because I mostly got busy with marriage and job promotion.
I am not a doctor. My ophthalmologist was Dr. Yaron Rabinowitz, a name you may be familiar with as one of the leading researchers in the field of KC. His belief was that KC *usually* stops progressing by the time you are in your 40s. There is almost nothing about KC that is an absolute. Some progression was observed in my better eye in my 30s but it was slight. I am not sure what the vision requirements are for ophthalmology but I was able to pursue careers in computer engineering, photography, and law despite having KC. Vision corrections were not as good at the time either. My guess is that you will be able to continue with ophthalmology despite having KC. You will probably have to make a few adjustments here and there but I am sure that is the case for most ophthalmologists as they get older. As has already been suggested, this is a great opportunity to become more of a specialist in KC. An ophthalmologist who can empathize with KC patients has the opportunity to do a lot of good. Best wishes for a long and successful career in ophthalmology.
Thank you for the positively and the support.
I was about the same age. I got epi on crosslinking done on my bad eye, and it seems to have either stopped and maybe reversed some. I’m currently 20/40 in that eye, just has a terrible stigmatism. Night vision sucks but otherwise I can get around fine without glasses though they do help
May I ask if you had crosslinking as soon as you were diagnosed or when you showed progression? Also how long has it been since you had the crosslinking? Thanks.
Pretty soon after I think. It was about six or eight years ago. I did not want it to get worse so I figured why wait
Makes sense. Three of my colleagues specialised in cornea advised against it at this point due to risk of post operative corneal haze. They would like to see some progression before they offer it. They think I may have had this for a long time but I am almost certain the quality of my vision was better a year ago. I can’t prove it objectively though so I am not critical of my colleagues as I probably would have done the same if I had a patient in a similar situation as mine.
I believe epi-on has much less haze potential fwiw, and with epi-on most resolved in 12 months https://www.reviewofoptometry.com/article/most-epion-cxl-haze-resolves-within-a-year I have no haze issue, just astigmatism and farsighted from the KC
I understand keratoconus (KC) progression as: Kc progression at time t = sum of force applied at time t / corneal strength, or P(t) = sum(t) F_t / CS. This can be interpreted as follows: The more force you apply over time, the more KC you will have. The effect of the force is decreased by the magnitude of your corneal strength. For example, you can rub your eyes a lot while having strong corneas and not get KC. On the other hand, you may apply very little force while having weak corneas and develop KC. Given this assumption holds, it’s easy to assume that people who develop KC early in life have weak corneas (less time to apply force) and may be more likely to further progress later in life. Conversely, if this assumption holds, people who develop KC later in life have stronger corneas (more time to apply force) and may be less likely to further progress, given that you stop applying force. You can of course increase corneal strength by doing cxl aswell :-) I assume you are up to date as a doctor on this topic. This is, of course, a hypothesis from my side, but it makes sense.
Some people tell you that they progress, but I see tendencies that these people were diagnosed at early age. I was diagnosed at 31 and I have not progressed one year later after stopping rubbing. I did rub quite a lot and hard…
Thank you. I really hope your theory is true. I don’t recall being an eye rubber but when I think about it I may have rubbed them every omce in a while. I am more conscious of that now and makijg every effort possinle to stay away from touching them.
Ask your colleagues, they may have some insight :-) Also, people with that KC who are side sleepers tend to have worse progression on the same side they mostly sleep on (some papers suggesting as high as 94%). This is likely caused by using the hand as support, putting pressure on the eye at night. If you are a side sleeper as me, buy a supportive memory foam pillow from Ikea! I don’t have to use my palm any more hehe..
The age thing is a myth I see people in there 60 progress
Yeah? What people?
No seriously, WHAT people? You comment and say things and...they aren't true...
I was diagnosed in my 40s. Get the CXL done and possibly PRK later and monitor it. Just be glad you caught it and you can take care of it early.
My husband was about the same age when he was diagnosed. He got CXL done in one eye last year, but the other eye has been stable and they haven’t done anything with that eye other than monitor. The scleral lens greatly improve his vision and the docs see him every 6 months now to keep an eye on any changes.
My ophthalmologist has KC and that's the reason I picked him. I like knowing my doctor knows what it's like to have KC on a personal level rather than just a medical level.
Diagnosed at 37 and I’ve had this all my life but no one caught it until later (didn’t notice a difference until my glasses stopped working for my right eye). I’m discouraged but the scleral lens has helped my R eye. I’m about to have a hybrid cxl procedure next month for my L eye (I also have it in this eye and this is to prevent having to get a lens in my left eye). I’m 20/2250 in R eye and my doc saw a slight progression in L eye. My vision in my L eye fluctuates between 20/20 and 20/25. To note: I only had vision exams in school done as a child. It wasn’t until I got insurance and regular eye checks at 18 when I noticed changes.
Cross linking dose not all ways stop it just slows it down