By Published On: 13 September 20199.8 min read

What’s the best cure for keratoconus? This is a question thousands of people in Australia ask every month.

Keratoconus is a disease of the front surface of the eye that causes progressive deterioration in vision. This typically begins in your teens and progresses during your 20s and 30s. Only 1 person in 2000 of the population is affected in a clinically significant way. This means that in Australia at least 10,000 people need treatment for this condition. The Eye Practice in the Sydney CBD, offers an expert keratoconus service to patients from around the country.

More details on keratoconus can be found here, but also read on to get the important basics.

Make sure you see an expert

Many people with keratoconus struggle to function in everyday life. This is due to inappropriate treatment options or advice. An important point to consider is that most eye care practitioners see about 2,000 eye patients per year. So, on average they will only come across one keratoconus patient per year. It doesn’t matter how smart you are; if you don’t involve yourself frequently with an activity you will never develop the skill to deal with it effectively and efficiently. There is no substitute for experience.

Because there is a lack of experience in managing keratoconus, often a patient with the disease will be steered in an inappropriate direction. Fortunately, you can be different!

What follows are seven vital issues in keratoconus that, if not understood, can lead to significant inconvenience, grief and emotional distress. When you understand and apply these important principles you can be at ease with this frustrating condition.

This information has been put together by leading keratoconus expert Jim Kokkinakis, at The Eye Practice in Sydney’s CBD:

1. You will not go blind from Keratoconus

JK: It amazes me that most of the patients I see fear that they will eventually go blind. This belief occurs simply because they have seen their vision get worse and worse. They fear that the eye condition will continue to degrade to the point that nothing can be done to recover the vision.

Some people have seen a number of eye care practitioners over time and no one has been able to fit them with contact lenses or glasses. They are too scared to pursue corneal transplant surgery. They then try to function with poor vision and believe it is only a matter of time before they will see nothing at all.

The reality is that no one goes blind from keratoconus. There are currently several options before corneal transplantation might be required, including:

1. Glasses
2. Soft contact lenses
3. Rigid gas permeable contact lenses. (When fitted properly this is the most successful option)
4. Rigid gas permeable lenses piggybacked on soft disposable contact lenses
5. Mini-scleral contact lenses
6. Intra-corneal ring segments with corneal collagen cross linking
7. Prescribing glasses, soft contact lenses or rigid gas permeable contact lenses after intra-corneal ring segments treatment

If corneal transplantation is finally required, its success rate is greater than 95% when done by an expert corneal surgeon. Please note that glasses or contact lenses are normally required after surgery, but visual quality is normally good to very good once the eye has healed. It is important to understand vision correction is still required in most cases. Somewhere along the line we always get reasonable vision.

2. Keratoconus does not progress forever

JK: Typically when I see a patient with keratoconus for the first time, they have been referred by another optometrist or ophthalmologist (eye surgeon). They are usually in their teens and they bring their parents along.

Keratoconus usually begins either slowly or aggressively during puberty. In keratoconus, the front window of the eye (the cornea) becomes thinner and thinner. It eventually destabilises and becomes irregular in shape, which causes a deterioration in the vision.

The typical person assumes that the condition will continue to progress forever but this is not the case. When I see a teenager accompanied by their parents I normally have a long and careful discussion, as everyone is stressed and upset. I have examined and followed thousands of people with keratoconus for 35 years. My experience is that for the majority of people, their keratoconus usually stabilises quite well after 25 years of age.

But there are a couple of exceptions such as when:

  1. They are wearing poorly fitted RGP contact lenses
  2. The affected person regularly and aggressively rubs their eyes – often due to uncontrolled allergy
  3. The affected person becomes pregnant, BUT, progression only occurs in some cases

Having read many articles on keratoconus in the literature and on the internet it is common to read that keratoconus progresses through to forty years of age and beyond. This is rare in my experience when lenses are fitted properly and the affected person and his/her family have careful counselling about the potential damage that is done by eye rubbing.

The moral of the story: “I promise to fit the lenses properly as long as you significantly decrease eye rubbing.”(See point 3)

3. Significantly decreasing eye rubbing is essential!

People who have keratoconus often have allergies. Hay fever, skin allergies, and asthma are common. With these conditions come itchy eyes. Another group of people that has keratoconus does not seem to have allergies but they do have a habit of eye-rubbing. Aggressively rubbing eyes can cause or worsen keratoconus. Therefore it is very important to have strategies to decrease the urge to rub.

It is theorised that by rubbing eyes that are predisposed to keratoconus, you traumatise the cornea. This causes it to become thinner and distorted in shape. This causes a distortion in vision that often cannot be corrected with glasses.

It’s one thing to know that eye rubbing is a problem. But it’s another to put a halt to it.

People with itchy eyes will tell you that it drives them mad and once they start they cannot stop until their eyes are red raw. It is this vicious cycle that can worsen keratoconus.

Decreasing eye rubbing cannot be overstated. You need to stop and you need to stop now. We’ve written about strategies to reduce eye-rubbing HERE.

4. Not all contact lens solutions are the same

Impeccable contact lens hygiene is critical to successful of contact lens wear, and consequently, good vision. It is obvious that keeping the contact lenses clean is important to maintain good eye health. But did you know that the solutions themselves often cause toxic or allergic reactions? This can make contact lens wear from uncomfortable to unbearable.

Contact lens solutions are preserved so that they remain sterile. Preservatives kill live bacterial cells but the eye is also made up of cells, which can be affected by these same preservatives.

Preservatives in contact lens solutions can make eyes go red, feel gritty and itchy. In cases like this I recommend a quick rinse with an unpreserved lubricant before inserting the lens into the eye. If you rinse the lens with an unpreserved solution before insertion, this dilutes most of the preservatives off the lens. If you do this after the overnight disinfection process, the solution does not have the opportunity to cause an adverse reaction.

Remember what we said before. Many patients with keratoconus suffer with allergies and are therefore more sensitive to irritants. Unfortunately the very solutions that protect our eyes from infections can also cause an allergic or toxic reaction. The procedure described above is not too difficult and often creates significant improvement in comfort. This leads to successful contact lens wear.

5. One-step cleaning solutions are not a good idea

JK: When I start a contact lens patient on a cleaning system I try to keep it simple, but not too simple! Many solutions today are promoted as “one step” and “no rub”.

For rigid gas permeable lenses I believe these types of solutions do not make any sense. These types of lenses normally have a life expectancy of at least twelve months. It is important to rub them with a detergent-based cleaner. The cleaner then needs to be thoroughly rinsed off with saline and then the lenses need to be soaked in a disinfecting solution overnight. Often a protein-removing solution also needs to be added to keep the lenses squeaky clean.

Unfortunately many patients are lured into the easier “one step” “no rub” solutions, innocently thinking that their lenses will be cleaned properly. This is not the case and will significantly shorten lens life and cause eye irritations in many patients. It is a bit like saying to wash your hair only with conditioner and never use a shampoo.

6. Your optometrist should professionally polish your contact lenses

This is very important when keratoconic contact lenses are involved. Your practitioner should be pre-booking you at least every six to twelve months.

Remember this: most people that have keratoconus are nearly 100% dependant on their rigid gas permeable contact lenses. Often glasses do not work very well and consequently contact lenses are worn during all waking hours, seven days per week.

Professionally polishing rigid gas permeable lenses using aluminium oxide is an often forgotten but extremely effective troubleshooting tactic. Despite your best efforts in cleaning, rigid gas permeable contact lenses can either deposit with natural tear secretions or lose their wet-ability. Both of these circumstances can cause significant discomfort and fluctuating visual quality.

Once the lenses have reached this state there are really only two options:

  1. Throw the lenses away and buy a new pair
  2. Professionally polish the lenses and resurrect them.

By polishing the lenses, their surfaces return to their original pristine condition and you can once again wear the lenses comfortably.

Polishing rigid gas permeable contact lenses is a highly technical activity. If not done properly the surface of the contact lenses can be burnt and the lenses are then ruined. I also do not recommend polishing the lenses more than twice, as the lenses slowly lose their durability and can split in the process.

It is therefore imperative that you have a spare pair of lenses before offering your current lenses for polishing. Remember it can take up to ten days to manufacture another set of lenses, so having a spare pair is always a great insurance policy.

7. Keratoconus experts are far and few between

JK: Earlier I mentioned that the prevalence of keratoconus in the general population is only 1/2000. In a country the size of Australia there are therefore only about 10,000 people that have clinically significant keratoconus.

There are approximately 3,000 optometrists in Australia. So, if patients with keratoconus were evenly distributed every optometrist would only have three keratoconus patients to look after. No optometrist in the country could possibly develop any expertise in this area with so little practice.

The good news is that there are a number of highly-skilled optometrists around the country that look after many keratoconus patients. The bad news is that they are almost all in the capital cities of Australia, so if you live in a rural area there is a good chance you have to travel to get expert attention.

If you read this report and have or know someone with keratoconus that is having a difficult time, I invite you to contact me via email at: [email protected] If it is too difficult to see me in at The Eye Practice in the Sydney CBD, I will direct you to your nearest keratoconus expert. With the appropriate care you will get an action plan into place quickly and efficiently. In no time at all you will wonder what all the trouble was about.

Worried about your keratoconus diagnosis? Talk to the experts. Call The Eye Practice today on (02) 9290 1899 or make an appointment online today.

(The Eye Practice originally published this article in June 2015. It has been read thousands of times. We updated it here for accuracy and relevance).

Comments

86 Comments

  1. Damon 10 August 2020 at 10:22 pm - Reply

    Hi there,
    i suffer from keratoconus and im currently seeing a specialist at Western Health in Melbourne however was wondering if you could direct me to keratoconus specialists in Melbourne. Thank you so much.

    Kind regards,

    Damon

    • Jim Kokkinakis 18 August 2020 at 11:33 am - Reply

      Hi Damon
      I hope you went well with the referral.
      If you need anything else please ask.
      Regards
      Jim

    • Chrissy 14 February 2021 at 1:09 am - Reply

      Hi damon

      There is an excellent specialist in bayside for keratoconus in Melbourne. His name is Dr Sullivan.

  2. Craig 12 October 2020 at 9:49 pm - Reply

    Hi
    I am in Perth WA and needing to see someone about my condition do you know anyone

    • Jim Kokkinakis 15 October 2020 at 11:28 am - Reply

      Hi Craig.
      A great practitioner is Damon Ezekiel. I will email you his details privately.

  3. Alan 16 October 2020 at 9:26 pm - Reply

    Dear Jim

    Thank you for an interesting read. I found your advice highlight beneficial. As a parent of a 21 year old show as recently diagnosed with keratoconus, his Ophthalmic Surgeon has recommended corneal cross linking. What is your opinion on this treatment. My son is on the Autism Spectrum and contact lenses are not a considered solution at this stage. Thank you for your guidance.

    Best wishes

    Alan

    • Jim Kokkinakis 21 October 2020 at 2:34 pm - Reply

      Alan I am delighted to have helped you. I would definitely consider cross-linking
      Keratoconus is likely to keep progressing at this age, so if contact lenses are impractical, it is the next best option, even though you cannot expect the vision to improve. It is just about slowing things down.

  4. Afzal Hussain Shuhag 19 October 2020 at 2:37 am - Reply

    Hi JK sir.
    I am a keratoconus patient. I was diagnosed first in 2017. And i have had my CXL in January 2018. After three years i can still see by my Right eye without glass with little astigmatism. But i can’t see anything even mobile text near to 2-3 inches. I have no other symptoms in that extremely bad eye. But i want to see 20/20 by my left eye. Is it possible? I am very much worried about my vision. I am 23 now. And i want to go abroad for my Master’s degree. I am in depression. Can i be able to live a good life ahead?

    • Jim Kokkinakis 21 October 2020 at 2:46 pm - Reply

      Afzal I am sorry to hear of your problems with keratoconus. luckily you have had CXL so I am not expecting the right eye to deteriorate now because of keratoconus. To try and achieve 20/20 vision in the left eye it is likely you will need to be fitted with a customised contact lens, specifically designed for keratoconus. Options include:
      1. Rigid gas permeable contact lenses
      2. Hybrid contact lenses
      3. Scleral contact lenses
      We have written about all these options on our page keratoconus and contact lenses

  5. Kadora L 22 October 2020 at 5:58 am - Reply

    Thanks for this information! I’m 24 years old and only last year told of my condition
    I have seen two specialists so far for Keratoconus and one suggested I should get cross linking done, while the other suggested against It and suggested lenses first as something about the pressure in the eye is below 400, 386 in on eye and 332 in the other, I’m very depressed and can’t continue my studies with fears that one day things may go wrong, I do have allergies as well… I am conflicted with my condition as I do have fears of losing my sight.. I still have no confirmation that Keratoconus does not lead to blindness from either specialist..
    Can you please refer me to another specialist, I need help.

    • Kadora L 22 October 2020 at 5:59 am - Reply

      Also I am in Melbourne*

    • Jim Kokkinakis 22 October 2020 at 11:05 am - Reply

      Kadora
      There is no reason to think you will go blind from keratoconus. The numbers you have quoted are in microns, which measure the thickness of your corneas.
      When they are below 400 some surgeons are successfully performing cross linking and also by the time most people reach 25, keratoconus usually will stop progressing, assuming you are not rubbing your eyes.
      You need to see two specialists. One to consider cross linking and the second to correct your vision, usually with customised contact lenses.
      I have been seeing patients with keratoconus for 35 years and in all that time (thousands of patients), i have seen two people go blind and this was because they had corneal grafts and were mismanaged with steroid eye drops. They went blind from glaucoma and not from keratoconus. You must not worry about that!
      Email me at: [email protected] for further information, as i know many specialists in Melbourne.

  6. Koso 23 October 2020 at 1:22 am - Reply

    hi sir,
    im a girl diagnosed days ago with keratoconus, im 26years now. my cornea thickness for my left eye is 391 and the right 411. Specialists here said that i need a keratooplasty on my left and cross linking on my right. Should i go direct on keratoplasty or can it stop with crosslinking in both of my sides.
    Also i wanted to ask you for daily care about this disease progress(for example. they said i shouldn’t handle the head very down).
    thank u for your answer.

    • Jim Kokkinakis 24 October 2020 at 12:47 pm - Reply

      Koso
      In Australia this is not how we would handle your case. Potentially you do not need any surgery at this stage. Being 26 means that it is likely that you will not progress much from here. Your best option is contact lenses fitted by a keratoconus optometrist.

      I am not sure by what you mean “they said i shouldn’t handle the head very down”. What you should not do is rub your eyes excessively, as it is common opinion that eye rubbing can make keratoconus worse.

    • Moksh 13 November 2020 at 3:36 am - Reply

      Hi I’m 23 years old and got diagnosed with it last month. On the report under kerotoconus screening it says thk 524 um kerotoconus compatible..will i need cross linking?..right now I was prescribed glasses and i am wearing them.

      • Jim Kokkinakis 26 November 2020 at 11:27 am - Reply

        Unlikely to need cross linking at this stage. You need to be reassessed in 6 months and then again 6 months later. If the corneal thickness becomes progressively thinner, then cross linking is appropriate.

        • Jonathan Mclean 7 February 2021 at 11:46 pm - Reply

          Hi Jim, my so. Age 17 was diagnosed with Keratoconus last week. He rubbed eyes since Primary school. He’s got 15% vision in the affected eye and 30% in the other. Our fears are that with such bad eyes will contact lenses even help or would it be a case of corneal transplant? We are from South Africa.

          • Jim Kokkinakis 11 February 2021 at 11:06 am

            Jonathan contact lenses can help with people with less than 10% vision often. I would not consider a corneal transplant until he was 25 as it is quite clear that people before 25 do not do as well with these transplants. Pursue contact lenses until then at least. if you see the right person he will do well. This guy here has a great reputation: https://www.pieterseoptom.co.za/new-solutions-for-keratoconus/

      • Laura Healy 13 April 2021 at 4:50 am - Reply

        Hi my partner has kc also had allergies and took accutane around same time he devloped kc. We have two boys i worry about is it always hereditary

        • Jim Kokkinakis 6 May 2021 at 10:53 am - Reply

          Laura
          Even though keratoconus is hereditary only around 10% of children, who have parents with KC will go on to develop this eye condition.
          Get them regularly checked from around 10 years of age, which is about the earliest boys can get it, as it is a disease of puberty. If they develop it, do not stress and we have a procedure now called collagen cross-linking which if done properly will not allow it to develop.

  7. moksh sangwan 16 November 2020 at 5:42 pm - Reply

    hi sir,
    I am a boy aged 23 and I was diagnosed with it last month. The report says left eye thk- 524um should I go for c3r and if yes then should I go for epi of or epi on?

    • Jim Kokkinakis 26 November 2020 at 11:31 am - Reply

      At the moment you do not need to do the procedure. I have explained this in a question you asked before. If c3r is done I would do epi off, as it is more effective.

      • Akeila A Pressley 20 February 2021 at 10:34 am - Reply

        So glad I came across this after years of what seemed like no help my daughter was finally told that now her right eye is in need of cross linking or cornea transplant it’s been a long road and this article gave me hope that she wouldn’t go blind as i have glaucoma in both eyes is there anyway that I gave it to her

        • Jim Kokkinakis 9 March 2021 at 3:24 pm - Reply

          Even though keratoconus can be genetic it is certainly not worth pondering about. All these procedures are valid but need to be done at the appropriate time if required. Make sure she gets a second opinion from a keratoconus specialist before doing any surgery.

  8. Rusty 25 November 2020 at 9:23 pm - Reply

    Hi,
    I’m just going to tell those that are interested my Keratoconus journey.
    I have had Keratoconus for 37 years. At 22 years of age i had had several changes of glasses since i was 19. A local new optometrist fresh out of uni examined me and said i think you have keratoconus – he had never seen it before, he had only studied about it. He referred me to Dr Hurst up at the Brisbane PA hospital and i was welcomed to the club. I went from small gas permeable lenses to larger ones and at 59 years of age i haven’t had a change of lenses for the last 5 years, usually got a new pair every 2 years It seems to have settled.
    At 22 years of age i thought that was it i’ll need a damn seeing eye dog, loose my job and get eaten by a drop bear wander through the forest because i cant see where i am going.
    Well nothing really changed for me as i was ready to adapt to my disability.
    I was an technical specialist for Telstra for 28 years, i used aids like bigger computer screen , maggy lamps, and being careful with my eyes, I had to stop martial arts – you cant fight with glasses or hard contact lenses. I still played squash with googles on. I still rode a trail bike, rode my mountain bike and swim and scuba dived regularly. I shoot very well with pistols using my left eye only. My biggest grief is the right eye is crap and i always rely on my left eye which is okay with the hard lenses in it. At more than 20 meters i cant see 100% clearly the bulls eye or where the bullets hit. however its always a tight group too high or low if a cant judge the distance correctly. I only use my target rifles with scopes because i can see with out them.
    All the things i could do at 21 i couldn’t do at 23. I had the best darn eye sight until 19 and it was like being robbed.
    So Keratoconus isn’t the end of the world, just roll with it and adapt. Its a journey you will have to do, so follow the advise and care plan of your eye specialist and be thankful it isn’t cancer or some really disastrous illness.
    An unexpected advantage is without lenses in i can see things 2cm from my eye, things people cant see with magnifying glasses.

    • Jim Kokkinakis 26 November 2020 at 11:19 am - Reply

      Dear Rusty
      Thank you for sharing your inspiring story. Every patient with keratoconus has a unique experience because keratoconus affects different people very uniquely. The major take home point is “So Keratoconus isn’t the end of the world”. You do adapt and if managed properly there are very few things you cannot do. We have professional athletes competing at the highest level, when we fit them with appropriate contact lenses. Hybrid and scleral lens technology means being able to do anything, even martial arts!

  9. Emma 2 December 2020 at 3:13 pm - Reply

    Dear Jim,

    I am 19 years old and I have only just found out I have keracteconus. I’m currently in my second year of a double degree of law and business and I am concerned with how this will affect my vision as I continue my studies. My father also had keractoconus but has had two corneal grafts.

    I went to my local optometrist and I was informed that cross-linking would be the next step and then after that I would need to wear glass contact lenses. In your opinion would this be the best option given my circumstances? Also, could you please recommend an up to date ophthalmologist who is performing cross-linking in Sydney.

    Warmest regards,
    Emma

    • Jim Kokkinakis 8 December 2020 at 10:55 am - Reply

      Dear Emma
      The very first step is to have an accurate spectacle prescription dispensed for best possible vision.

      This might only be for driving at night time, or for study or for all activities. It depends on the unique vision requirements of each patient. Sometimes glasses cannot be prescribed and only contact lenses will allow decent vision.

      Then careful monitoring is required to prove that the keratoconus is still progressing. Even though at 19 it is likely to progress, I have seen cases stop progressing at 16. Performing collagen crosslinking without any thought and monitoring is not in most patients best interest. At your age one or two more consultations (with appropriate monitoring technology), at 3 month intervals should be enough to know what to do next.

      Ophthalmologists that we use routinely really depend on where you live. There are a number of leading authorities doing crosslinking. Tell me what suburb you live in and I can direct you to the appropriate person.

  10. Ashleigh Odell 13 January 2021 at 11:16 pm - Reply

    Hi how are you!? So I’m 28 I was diagnosed with keratoconus 3 years ago! Then my only symptom was blurry vision. And all I needed was glasses. I’m currently still using my glasses! I’ve had a baby within that point so now I’m noticing my vision has gotten a bit blurrier and I’m noticing stuff like ghosting and a glare. I can still read and see without my glasses. It’s a bit blurry in my right eye and even more in my left. But I can see. I’ve even driven without my glasses at night. This isn’t to say my vision is perfect. I only said that to explain that I can read/see! My glasses just makes thing clear! However I’m NERVOUS about it progressing! Does everybody progress the same? When I’m 60 how will I be? That’s a fear of mine! I’m at the point that I don’t even want more kids. Because each pregnancy has made my eyes worse! I’m a wreck. Very conscious of my eyes! It’s on my mind 24/7. I need insight!

  11. Sara 14 January 2021 at 12:19 am - Reply

    Hello sir,
    Thank you for this article. I was diagnosed with keratoconus at 16 (5 years ago), they suggested for me to get crosslinking done, but I was very much broke and busy with school so I just took a part of their advice to lessen screen time, not to read in low light and to, most importantly, stray away from rubbing my eyes. I never wore glasses or contacts nor required them at any point in time. I am 21 now and am starting to think of starting a family of my own in a couple of years. Naturally, this started to worry me as I’ve heard a lot of people say how tricky it can be giving birth with such bad eyes. To be completely honest, I haven’t gotten my vision checked out since my diagnosis which I know isn’t right. But I truly haven’t experienced any deterioration in my sight. What do you advise me to do with all this?

    P.S. for what it’s worth, know that I’m from Croatia

    • Jim Kokkinakis 11 February 2021 at 2:22 pm - Reply

      Susan everyone with keratoconus is unique. If you havent felt your eyes have changed, assuming you check each eye individually then I am fairly confident you probably have not changed much. Please be aware that becoming pregnant in some individuals can progress keratoconus. I would be reassessed some time soon.

  12. Catharina 17 January 2021 at 12:47 pm - Reply

    Good day Jim. Thank you for the information. I was diagnosed with “keratoconus” due to laser eye sugery 20 years ago. I am scheduled for the cross linking surgery and would just like to know if this is the only option. I am a dentist and the idea of possible blurred vision really worries me. Is there an alternative treatment option?

    • Jim Kokkinakis 11 February 2021 at 12:02 pm - Reply

      I have seen a quite a few health practitioners that have developed keratoconus after laser surgery. I would suggest expertly fitted scleral lenses, as these will maximise your vision potential like nothing else. Crosslinking in your age group is unlikely to help much.

  13. Cynara Ellis 23 January 2021 at 6:28 pm - Reply

    Hi, I just got the diagnosis that I have Keratoconus and I wanted to get a second opinion about surgeries since I’m already past 25. I do believe I had this since I first started wearing glasses when I was in early puberty.

    I am currently in Saint Louis, MO; I was able to find all my past prescriptions as well so a trend can possibly be seen.

    • Jim Kokkinakis 11 February 2021 at 11:58 am - Reply

      Cynara your history is quite normal for keratoconus. I am not sure surgery is what you want at this stage. It is important to exhaust glasses or contact lenses by a keratoconus optometrist specialist who can then determine your needs. Surgery is always a last resort.

  14. Joseph 24 January 2021 at 5:46 am - Reply

    Or can I use torric lenses?

    • Jim Kokkinakis 11 February 2021 at 11:56 am - Reply

      Yes this is possible sometimes, but needs investigating by a keratoconus optometrist

  15. Joseph 24 January 2021 at 5:51 am - Reply

    Hello sir
    I am male aged 25 years and I had undergone C3R in my right eye. Corneal thickness of the right eye is 511 microns and K2-50D and Kmax-48.9D. further can I correct my vision with glasses or torric lenses or is it must to use RGP lenses?

    • Jim Kokkinakis 11 February 2021 at 11:49 am - Reply

      Joseph at this level of keratoconus it is likely (although not guaranteed) that you should be able to correct your vision with glasses.

  16. R.J Luis 28 January 2021 at 6:14 am - Reply

    Hello R.J here

    I really enjoyed your article! Very informative and straight to the point.

    My wife recently went through this procedure , and it was awesome to be there to support her and to actually see it in action.

    I would like to know if i can connect your article to my video that i made? People could really find this information useful and comforting.(Can help remove the jitters before taking action with procedure).

    Thanks.

  17. Luciana 1 February 2021 at 4:56 pm - Reply

    Dear Jim, Reading about keratoconus in you website answered many questions for me. I am 40 years old and was diagnosed about 8 years ago. My left eye is worse with contacts I can still see with my right eye. I have been very worried about eventually not being to work. I have two girls 11 and 4 and I am scared about the cross linking procedure. I was so happy to read that I will not go blind. I have been to cross linking consultation but still very scared that something might go wrong with my best eye. Do you know of any specialist you can recommend in southern California

    • Jim Kokkinakis 11 February 2021 at 11:44 am - Reply

      Luciana I am not sure I would recommend cross-linking to someone that is 40 years old. Part of keratoconus management is to manage the different categories of keratoconus appropriately but also the psychological aspects.. You will not go blind and all you need is best glasses or contact lenses depending on the severity.

      This guy looks good:
      https://drbleonard.com/keratoconus/center/

  18. Albizu 5 February 2021 at 1:04 am - Reply

    Would you be able to recommend anyone in the the United States, Massachusetts specifically?

  19. Arpit 9 February 2021 at 5:04 am - Reply

    Hey Jim,

    As instructed by Doctor i have keracteconus in only my left eye (cross-linking surgery is done) and my right eye is absolute fine. I am always scared that will my right eye will also get effected as i have keracteconus in left Eye . I am currently wearing sometime lense or sometime glasses . When i am wearing lens i am able to see very cleary . Should i be wearing that this diseases will go to my right eye aswell . What precaution shall i take for right eye now. My Age is 25 year

    • Jim Kokkinakis 11 February 2021 at 11:02 am - Reply

      Arpit the only thing you can do is not rub your eyes and maybe consider cross-linking. I would not recommend cross-linking unless there is some evidence of progression to keratoconus in the right eye. The fact you are 25 is good because it is less likely to progress after 25 years of age.

  20. Saurabh 20 February 2021 at 6:37 am - Reply

    Hi there ,
    I have keratoconus in my left eye and I have gone through cross linkage (C3R) surgery its been one year now . I Have RGP lens but I tried and it was very uncomfortable so I decided not to wear it and use my normal eye glasses.
    1) Is it okay to wear glass like if I don’t wear that lens will that increase my keratoconus?
    2)My RGP lens is one year old and from past 6-8 months its been in the same solution , can I reuse it ?
    3) Is this surgery is temporary solution or permanent , like does it need to be done again after some year?

    • Jim Kokkinakis 9 March 2021 at 3:21 pm - Reply

      Saurabh let me answer your questions one at a time:

      1) Is it okay to wear glass like if I don’t wear that lens will that increase my keratoconus?
      Answer: It is perfectly safe to use the glasses. Not using contact lenses does not make keratoconus worse.
      2)My RGP lens is one year old and from past 6-8 months its been in the same solution , can I reuse it ?
      Answer: Yes you can assuming the lenses still fit and you clean them properly
      3) Is this surgery is temporary solution or permanent , like does it need to be done again after some year?
      Answer: It is likely to be permanent if you are older than 25 years old. If you are 15 then you might need another procedure in the future, but it is unique to the individual and your particular case cannot be predicted.

  21. Saurabh 20 February 2021 at 6:39 am - Reply

    My age is 25

    • Jim Kokkinakis 9 March 2021 at 3:22 pm - Reply

      I just saw this, so the procedure is likely to be permanent now.

  22. Michael 24 February 2021 at 1:58 am - Reply

    Hey Jim,

    My girlfriend who is 23, just recently had both of her eyes Crosslinked. One eye was done late November 2020 and other other was done in early January 2021. It has been about a month since her left eye was done and apparently she is healing very nicely and has been feeling no pain but her vision is apparently worse than before the procedure and she cannot drive because she fears she is a danger in the road. My question is that how long will it take for her vision to recover and if she’ll need contact lenses to correct her vision where she may safely drive again? (She has never been able to see properly even before the cross linking procedure) Her doctors are not being straight forward with answers and she is fearful to get a corneal transplant if that is her only solution.

    • Jim Kokkinakis 9 March 2021 at 3:25 pm - Reply

      Michael it is likely that she will now need contact lenses to make her see properly. Surgeons do not fit lenses well. She must see an optometrist who specialises in keratoconus. Where are you from, maybe I can recommend someone.

  23. Sadie 24 February 2021 at 2:09 am - Reply

    Hi Jim,

    Thank you for all this information. I am almost 24 now, but was officially diagnosed with Keratoconus August of 2020. I had Cross linking done in my right eye in November of 2021 and then my left eye was done in January of 2021. I am having an incredibly difficult time seeing, I have my contact fitting March 9th, thankfully. I am a little skeptical just because I do have such sensitive eyes, and have read online that these contact lenses can be quite uncomfortable. Everything bothers my eyes, even during the actual procedure both times my eyes just wouldn’t cooperate. Constant flinching, wateriness, and blinking the whole time. Do you have a suggestion of what contact lenses may work better for someone with extremely sensitive eyes?

  24. chantal 5 March 2021 at 10:42 am - Reply

    Hello, I am finding this discussion to be very interesting. I have worn glasses since the age of 5 and my prescription never really stabilized as I was told to expect it would (first after puberty, and then in my mid-twenties). Every year my vision has deteriorated. I have astigmatism, but it is relatively mild. I started wearing soft contact lenses at 13 and wore them happily for almost 20 years. They moved around more than I liked and fell out sometimes but freedom from glasses made it worth putting up with those minor inconveniences. About 5 years ago I stopped being able to tolerate soft lenses at all. My left eye won’t accept the lens anymore, it doesn’t seal into place. It spins and slides around and just plain hurts. It’s impossible to wear. My right eye will still fit the lens, but not comfortably, and every time I blink I need 5 seconds to refocus my vision. So I don’t wear contacts anymore. My glasses weren’t helping very well either, so I got an updated prescription and got new glasses. I was convinced they were defective. They were brand new glasses yet I can’t read signs or make out people’s faces until they are right next to me. I have always had trouble with light and halos and night vision, but it was getting so much worse. It wasn’t until I went back to the optometrist last summer in desperation, begging him to help me find contacts that I could wear (because I was fed up with foggy glasses due to mask-wearing), it was only then, at the age of 38, that he suspected keratoconus and referred me to an ophthalmologist, who in turn referred me to another ophthalmologist at the specialist eye clinic in the hospital to confirm the diagnosis. Since my prescription is still rapidly changing long past the age that things are supposed to slow down and stop progressing, I am not sure what this means for me, being 38 and just diagnosed. I will hopefully be fitted for scleral lenses, as soon as I can afford them. My glasses don’t give me totally clear vision but they are good enough, and worlds better than nothing.

    • Jim Kokkinakis 6 May 2021 at 2:33 pm - Reply

      Chantal
      I am sorry to hear of your predicament. If the practitioner is experienced with scleral lenses then this will give a great outcome. Where do you live? Maybe I can recommended someone for you.

  25. Jones 7 March 2021 at 5:43 pm - Reply

    Hi doctor,

    First thank you very much for this article which gives me pleasure and comfort be blessed

    I’m 25,’male diagnosed with keratoconus few weeks ago but i lived with brulled vision for quit many years untill i decided to go hospital

    My eye doctor recommended a cross linking : my right eye vision is 40% and right eye 95% vision.am very scared with the procedure for now i decided to take glasses and i‘m now using glasses.it helped me somehow but i dont see that much clear

    What is your recomendation about my case ?? Should i do the procedure or should i go for contacts lenses ?? Any suggestion doctor please

    • Jim Kokkinakis 6 May 2021 at 2:30 pm - Reply

      Hello Jones.
      It is hard to know whether crosslinking (CXL) is the correct choice at this stage, as most people stop progressing after 25. Also CXL can sometimes make the vision worse, so keep wearing the glasses for now. Contact lenses will give you better vision but you must make sure who ever fits them are very experienced with contact lenses.

  26. Owais 8 March 2021 at 12:10 pm - Reply

    Hi Jim! Thanks for the article. I have undergone CXL epi off surgey in both eyes 10 days back and I am already 80% pre surgery vision. I am soon turning 24 and sudying IT. I’ve some questions regarding future managemet of the disease.

    I’m a bit concerned about the effect of daily computer use as a part of my studies and work. Is there any evidence that screen time can worsen the keracteconus over time. My left eye is most effected by it and has vision loss of 80% but my right eye is better with only 20% vison loss.

    I want to ask your advice on the matter as I’m considering changing my line of study and work if it helps in the long run. Thank you.

    • Jim Kokkinakis 6 May 2021 at 11:05 am - Reply

      Owais
      The computer will not affect you eyes. What can occur though is that you get dry itchy eyes from excessive computer work, which in turn forces you to rub your eyes aggressively and frequently. This can make keratoconus worse.
      Do not change your career if you like it. Follow our advice here and you will be fine:
      https://www.theeyepractice.com.au/eye-strain/treatment/

  27. Shan 21 April 2021 at 8:51 pm - Reply

    Hello, thank you for such helpful information. Based in England and a family member has been recently diagnosed at age 23. They seem to be recommending surgery in the least affected eye to prevent further deterioration and cornea transplant in worst affected eye. They don’t seem in a rush to treat and keep postponing. Does this sound about right in your experience ? Do you know any specialists in England ?

    • Jim Kokkinakis 6 May 2021 at 10:45 am - Reply

      Shan
      It is difficult to be sure without seeing you. Everyone of course is unique.
      The procedure to slow down further deterioration is called collagen cross linking (CXL). More information about keratoconus can be found here:
      https://www.theeyepractice.com.au/about-keratoconus/keratoconus-treatment/

      They should do CXL if they measure signs of progression. A corneal transplant should only be considered when all forms of contact lenses are exhausted by a keratoconus optometrist. Corneal transplants nearly always return patients to glasses or contact lenses and typically they are more complicated. Do not go there unless yo uhave had proper advice!

      If you can get to these guys, they will give you a better perspective and maybe refer to an ophthalmologist for a second opinion about surgery if required:
      https://www.tks-optometrists.co.uk/specialist-services/

  28. Jo 7 May 2021 at 9:18 am - Reply

    Hello Jim, My 21yr old son has recently been diagnosed with keratoconus in both eyes. One worse than the other. He has suffered allergies all his life and has ceased all eye rubbing as he now understands the seriousness of it. He has seen an ophthalmologist in Newcastle and is booked in for epi-off CXL in right eye in June. This has all happened very quickly and I am feeling very apprehensive about it. He has not been offered any type of lens. He’s been told to wait till after cxl procedure. I’ve also been reading about epi-on cxl and wondering if this may be an option for him. I would love to hear your thoughts on this. Thank you

    • Jim Kokkinakis 11 May 2021 at 4:35 pm - Reply

      Jo this is very traumatic on a parent, I understand. If CXL is appropriate I would recommend epi off, as it is clear that it is more effective. If he is havig CXL then you need to wait for the contact lens fitting, no earlier than 6 weeks after the procedure. At the end of the day he will do fine, as the procedure now has a long history and when performed by a corneal specialist invariably is very successful, in slowing down any further progression.

  29. Ronika Jain 8 May 2021 at 11:54 pm - Reply

    I live in India, and I am diagnosed with keratoconus

    Your article helped me alot in understanding this disease.

    My doctor suggested me wearing contact lenses is not going to make my eyes better or not wearing it will not cause any harm.. It is just to improve your vision. Would like to know your opinion.

    • Jim Kokkinakis 11 May 2021 at 3:01 pm - Reply

      Ronika
      The doctor is correct in that the lenses on average will improve the vision. Where there can be a problem is when lenses are fitted incorrectly, they definitely can cause a lot of harm. If they are not fitted properly they can rub the eyes excessively and cause the condition to get worse.

  30. Varun 11 May 2021 at 8:42 pm - Reply

    Hi, I’m from India I have been diagnosed with keratoconus, my Dr. Has suggested C3R due to the slight progressive nature. I am 24 and 4 months old. Is that the right option? Will I be able to see clearly without lenses?

    • Jim Kokkinakis 8 July 2021 at 4:52 pm - Reply

      It might be the correct option, although do not expect that you will be less dependent on lenses. This procedure is to slow further progression not to improve vision. Occasionally vision improvement occurs but not as a rule.

  31. Ayub Jamal 7 June 2021 at 6:22 pm - Reply

    Hi
    I have been diagnosed with keratoconus. I did my CXL epi on, however, six months after the treatment my vision is not stable, my prescription glasses number is -2.25,-4.5, 80. however, I find it difficult to see the laptop screen. I can’t wear a contact lens because it causes redness in the eye. I’m a software engineer by profession so my computer usage is a bit more. kindly recommend what should be done in this scenario.

    • Jim Kokkinakis 8 July 2021 at 4:13 pm - Reply

      Ayub you need to see a specialist in keratoconus management that is an optometrist. I am not sure what country you are from?

  32. Joseph 8 June 2021 at 1:34 pm - Reply

    Hello Jim,

    Thanks for the info. I am 52 years old and my keratoconus symptoms started five years ago. An unknown infection to the eye and extremely aggressive rubbing would be the most probable cause. After seeing three opticians the third finally detected the keratoconus and refereed me to the NHS hospital for confirmation. In January 2021 the keratoconus was confirmed by the hospital consultant and due to the thinness of the cornea he placed me straight onto the waiting list for CXL. However, whilst waiting for CXL I have had a subsequent follow up appointment last month (May 2021) with the consultant, the outcome of which the consultant has said that my keratoconus appears to have stabilised and I do not need CXL because my cornea has got thicker.

    The main question I would ask is have you ever heard of the cornea getting thicker again because I can not find any mention of keratoconus on any website were it is said that the cornea can recover in this way.

    I have seen four opticians about glasses since this started and none of them seem to have the skill to focus my eyes as the glasses do not work, they only remove some of the blur. Could you please recommended someone I could see about getting contact lenses. I am from Paisley in Scotland.

    Thank You.

    Regards,

    Joe

    • Jim Kokkinakis 8 July 2021 at 4:11 pm - Reply

      Joseph, It is very unlikely that keratoconus has appeared this late in life. I suspect that the thickening of the cornea was just a mis-measure on the first scan.
      You definitely need to see an optician who understands keratoconus. I will speak with a Scottish colleague of mine who is now in New Zealand about who to see. In case I am slow in getting back to you, it seems that the Dundee University has published some nice papers on this topic. Whether they have an experienced optician on staff is another story.
      Here is a link to who seem to be a great group of optometrists that are independent and are no influenced by any corporate entity: https://cameronoptom.com/specialist-contact-lens-centre/our-experts/

      • Alicia 13 August 2021 at 6:49 am - Reply

        Hi I’m Alicia and iam 18 I don’t know yet if i have keratoconus but iam about to find out. I read your article and all your response to the people who have it and i think i have it to. Since i got my eyes tested 4 years ago the doctor only told me that my right eye is weaker than my left eye , but this is now my 3rd prescription i got my 2nd one this year and in less six months i went for a new one cause i started having headaches and eye pain.I discoverd glare and halos at my 2nd prescription but i thought it was the glasses thats causing that. My weaker eye is very blur and I barely cant see with it and now i see a bit of glare in the day light too. I discoverd floaters in my weaker eye ,double vision when reading on my phone screen or even when i watch tv and i discoverd that my stronger eye vision is not the same anymore, so i just want to hear if its possible that i have keratoconus. And whats the first step i have to take if i have it.

        • Jim Kokkinakis 2 October 2021 at 3:24 pm - Reply

          Alicia sorry for my late response. It is possible you have keratoconus but you might also have myopia with astigmatism. Tell how you went with your consultation.

  33. Nadia Islam shanta 13 July 2021 at 11:12 am - Reply

    Assalamualaikum jim hi
    I am from Bangladesh. My younger sister who is 16 years old is suffering from keratoconus. The condition of her left eye is quiet severe while right is mild.she has already undergo cross linking surgery in her both eyes. Now her doctor is advising her to use rgp lenses. But is it safe for her???

    • Jim Kokkinakis 2 October 2021 at 2:33 pm - Reply

      Hello Nadia
      RGP lenses will ceratinly improve your sisters vision, but if they are fitted inappropriately they also can make the keratoconus much worse.
      The fact her right eye is mild, DO NOT let someone fit her with RGPs in that eye, as she should be able to wear glasses in the right eye if she needs to see better. Often there is a misunderstanding that RGP lenses help stop the progression of keratoconus. This is NOT true. In fact as I said if fitted inappropriately they can make things worse.

  34. Dv 24 July 2021 at 1:51 am - Reply

    Hey Jim, I’m 28 and diagnosed with Keratoconous last week. My doctor recommended cross linking for both of my eyes. I don’t see any major difference and I’m comfortable with my glasses. One of my friend told me that progression will stop after certain age. Is it recommended to go for the cross linking. Please advice. Thank you!!

    • Jim Kokkinakis 2 October 2021 at 2:47 pm - Reply

      Dv\At 28 it is unlikley that your keratoconus will become worse, especially if you do not rub your eyes. I would see another practitioner for a second opinion. Doing eye procedures unless necessary are not a good idea, as complication can occur.

  35. Bojan 26 July 2021 at 4:31 am - Reply

    Hi Jim.I am 30 yeras old and i have been diagnosed with advanced keratoconus in the left eye cct299 and in the right cct539.Do i need transplantation? THANK YOU

    • Jim Kokkinakis 2 October 2021 at 2:49 pm - Reply

      This is not an easy question without more information. If you have been fitted with a scleral lens unsuccessfully by someone that knows what they are doing, then a corneal transplant is reasonable, but again must be done by someone who knows what they doing. Some that does at least 50 corneal transplants per year typically has a good skill set.

  36. Isabella 7 August 2021 at 3:20 pm - Reply

    Hello Jim,

    I am 28 now and I was notified by my eye doctor that I have a cornea ectasia and a tendency to develop keratoconus after a pre check up for the SMILE operation (her exact wordings were: there are four stages in keratoconus and my situation is close to stage one). Currently I am wearing my glasses (with short sightedness of 150-275 on both eyes) and my short-sightedness has not changed for almost 4 years. She told me I could consider doing CXL but did not specify the urgency. She told me I should continue to wear glasses.

    I wonder in my case, is CXL a necessary surgery as there are certain risks and side effects possibly, or if it is acceptable if I do not do CXL but keep wearing glasses and good eye hygiene?

    Thank you very much!

    Isabella

    • Jim Kokkinakis 2 October 2021 at 3:06 pm - Reply

      Isabella your situation is quite simple in most cases:
      1. Do not have any eye surgery
      2. You probably will never need CXL, as things tend to stabilise after 25.
      3. CXL can have negative side effects that you do not need to expose your self to.
      4. Just keep wearing your glasses and do not look for trouble.

  37. Abby 16 August 2021 at 9:40 am - Reply

    Hi Sir,
    I’m a 26 year old diagnosed with B/L keratoconus a few months back. Currently my doctor has given me some medications and told me to refer 6 months later.
    I have completed med school and was preparing for post grad. I want to become a surgeon, maybe even do a super specialization. I’m worried if this disease will have any consequences down the lane if I chose to be a surgeon.
    And all my classes are currently online, about 10-12 hrs a day. Is it okay to be exposed everyday for such long periods?

    • Jim Kokkinakis 2 October 2021 at 12:24 pm - Reply

      Hi Mr Medicas
      26 yrs old is a relatively late diagnosis, which statistically good, as the later you are diagnosed the less chance of any signifiacnt progression.
      Keep up with your great work in your studies. Even in the worst case scenario you should be fine, as contact lens technology has improved dramatically, especially in the area of customised scleral lenses.
      I have written many articles about keratoconus and contact lenses. If you start here there are many articles to read: https://www.theeyepractice.com.au/contact-lenses/scleral/

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