We’re here for you.

Keratoconus Group is a safe, supportive community for people living with keratoconus and the people who care for them.

Join our community

The most heartbreaking thing about having keratoconus

The most heartbreaking thing about having keratoconus

I'm Emily, wife and mother of two gorgeous boys. I got diagnosed with keratoconus in one eye about 6 years ago when I was pregnant with my youngest. But after giving birth and suffering from post natal depression, I did not attend the follow up appointment.

With my eyesight getting worse and worse, I made another appointment a couple of years ago and got checked out again, deep down hoping and praying it was a mistaken diagnosis before. Sadly the doctor told me I did “still” have it but this time in both of my eyes, which I admit did break me down a little.

I got told I got keratoconus, from having eczema and rubbing my eyes too much, as eczema comes with allergies, it's not easy to not rub my eyes. (I do try not too now).

In further appointments I was given the hard contact lenses, too which I was amazed with how much I could see, but the downfall was the pain it caused my eyes, I could only ever last no longer than fifteen minutes wearing them, due to the irritation and sick feeling I was getting from them. I made the decision to stop wearing them to be in constant pain and having bloodshot eyeballs. Which some of you may find silly but I hate eyes and I have a weird phobia, great condition to get with this phobia!!!

The most heartbreaking thing about having keratoconus is not being able to see my children's faces properly, having the thoughts in my head that I won't “see” them become adults.

Picking the children up from school can sometimes be embarrassing as a few times I have waved a children who I think are mine but when they come closer I realize they are not my kids, get some odd looks from parents for that!!

Adam and Ethan are 10 and 6 years old. Sometimes when we are out they take my hand and help me across a road, or help me find objects in shops that I cannot see. They are such helpful and caring boys that me and my husband John are so proud of them.

I use to love drawing pictures, it was my passion and getaway. Until recently, I was helping Ethan color in a picture, but my eyes could not focus properly and I could see more lines of the picture than there was. I do still try and draw but have to keep asking husband and children, “Does it look right?” “Does it look like what it is meant to look like?”.

Having keratoconus is not just having an eye condition I suffer with, it effects everything. Your daily routine, going on a simple shopping trip, taking the kids to school, watching a school play, not recognizing people in the street and looking ignorant, having my husband, who I'm in love with and have been for a third of my life, become my registered carer and look after me. To be honest it can really depress me at times, I can sit and cry for no reason about it and dwell on the future of what could happen with my eyes.

Emily (Twitter: @EmilyHpool) Keratoconus Group Blog
But in a way I have come to the conclusion that my eyesight is going to get worse and worse, so I have decided that I am going to live my life to the full and experience as much as I can, before I cannot see it anymore.

Now sorry I have probably bored you all silly with going on, but thank you for letting me share my story and feelings about having keratoconus, and also thank you for reading.

Emily (Twitter: @EmilyHpool)

Share to spread awareness!


  1. Hey i am
    Exactly same
    As you please don't ever lose hope have you tried HYBRID lenses they are very comfortable and help a lot xx prays for u x

  2. Since 15 years I have keratocous in both my eyes and I have a big cilinder too. I used to be in a lot of pain with the hard contactleses and had to adjust in several ways.
    Since 4 years I wear scleralenses (Those really big contactlenses, at first I was convinced they would never fit!) and they are absolutely fabulous! I can see at least 90% sharp so I can completely take care of myself. And no pain whatsoever! Most of the time I forget I even have it. There is really no need to not see your children or to be dependent of others. Please find the right doctor and truely start enjoying and living life to the fullest. Lots of love Suzanne

    1. Just too encourage you. My son had two successful cornea transplants at the Queen Victoria Hospital. EAST GRINSTEAD. SUSSEX. Wonderfully gifted surgeons. My son has a good life now. Hope this helps.

    2. Pls give me your Email ID pls.
      Me too undergone cornea transplant.

  3. Hello Emily
    I can relate to "Picking the children up from school can sometimes be embarrassing as a few times I have waved a children who I think are mine but when they come closer I realize they are not my kids, get some odd looks from parents for that!!"
    A few days after my son commenced school I found a large golden Harry Potter snitch soft toy/key ring & attached it to my son's backpack so that when they were dismissed I waved to the correct child :)

  4. I totally understand everything you have described is exactly like me.I was diagnosed when I was 25 having the condition in both eyes and had my cornea transplant in my right eye when I was 27.the sight in that eye has improved a lot as my left eye gets worse. I need to have the transplant done on this eye now too.it can be very depressing and has caused me to have very bad anxiety to the point I hate going outside in crowds I need my kids stuck to my hip and going out at night terrifies me.life is definitely hard with this condition.non of the contact lenses worked for me I have glasses & some times dont think they work until I take them off and relies oh yes they do cause I can't see a thing with out them lol. the world is just a blur. Try and keep your chin up when I feel down I try and remember there are people going threw worse than me and while I have my sight as poor as it is some people don't.am glad we have this group we can all help each other

  5. Mini-sclerals!!! Comfortable- amazing. I have very bad ker on right eye over focal point and with it I can actually see! Expensive. Can take a few goes to get the correct fit but it's all part of process. left eye has been good with glasses but does have ker too on lower side and not over focal point thankfully. Scleral in that eye doesn't fit so comfortably and given sight with glasses is good - I'm going to go with glasses and 1 scleral. These new lenses are incredible! - look scary as but I don't notice until after several hours any discomfort and hardly notice it in. Brilliant!!!!!

  6. I too have a same story. It does feel real bad. I am into designing (tshirts and other graphical designing) so you can understand how tough it to know that you have keratoconus. I too tried RGPs but the pain and irritation was to high. I stopped using it and designing for a year.

    Then I found out something called mini scleral lenses. These are much more costly than RGPs but on the flip side they last way longer if you don't lose them. And believe me they are super comfortable. Once you master wearing and removing them, they are bliss. I wear them for 12-15 hours daily. Even have wore it for more than 30 hours on several occasions.

    Do ask your doctor about the sceleral lenses.

  7. I was diagnosed with this condition at 17 years. Pregnancy escalated it, so needed to have my children quite close together so that I could have my grafts. I didn't have penetrating grafts but grafts that were to be 'temporary' until I had finished having children. These temporary measures were so successful that, 50 years later, I still have them. Now, at 73 I have developed cataracts. I have had one cataract operation, two years ago but the other eye seems to have stabilised so the ophthalmologist is just watching and waiting. I may never need an op on that eye. I would urge you to consider corneal grafts if at all possible. I wear glasses for driving and reading, although can read without in a good light. I hope all works out for you. I can't recommend a surgeon for you as I live in NZ.

  8. I am so sorry that you are going through this, I can definitely relate to your story. Having four young kids I often worry about not being able to see my kids, I recently had the “cross-linking” surgery done couple months back to stop the progression of my disease. The procedure was done in my right eye which was my worse eye and I am going to be doing it in my left eye next month. Check out my full vlog of my procedure