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How keratoconus complicated my life for the past 25 years

Dear Keratoconus: You have complicated my life for about 25 years. Can't say for sure because for so long I went undiagnosed. I have worn hard lens, gas perm lens, soft lens, piggy back lenses and now scleral. Glasses are no longer an option to give my eyes a rest after 15+ hours of wearing sclerals a day.

You have made driving a challenge. Night driving, unless for a short distance where I know the roads, has been over since the age of 50. That has brought about anxiety issues.

You have taken away my love of reading. Sure I use glasses for reading but squinting when reading a book is not enjoyable.

You have taken away my ability to be accurate at work, from typing numbers to reading emails and all other computer work. I catch so many mistakes because of my inability to see clearly.

You gave me cataracts at the age of 45, and I had to function with one eye each time for 6 month period before and after surgery. And then a few years later I needed Yag capsulotomy.

You gave me floaters. You've made my eyes so sensitive to light, sunglasses are always a must.

You make me use a 10-15X mirror to put on makeup so I don't leave the house looking like a clown. Mascara has never been a part of that because I don't dare take a chance a flick of it gets in my eye.

You have made scleral lenses my best option. They are very expensive, (which insurance does not cover) I need special plungers, solutions and cleaners to take care of them, and need to have those supplies with me at all times.

Sue Harley @SueHarley5I recently was having a bad "gooping" day and took out the lens to feel rough edges. Taking a magnifying glass I could see 2 chips at edge of lens. Three months old and another $500. Now this happened to the left lens.

You have taken so from me at such a young age. Multiple times everyday I am am reminded in some way or another that I am dealing with keratoconus.

I know there are so many other diseases that are worse than keratoconus, I realize that, but I don't think many people are even aware of this disease and what it robs us of.

Sue Harley @SueHarley5

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  1. Sounds like it could've been written by me. I was diagnosed in my mid-twenties. I'm 62 now. I've also had two cataract operations. I don't drive at night and only in familiar areas during the day. I only wear mascara on holidays or special occasions. I wear a RGP lens on one eye and a scleral on the other. Even with the lenses, I can only see well enough to read out of one eye, but that hasn't stopped me from reading. To replace my scleral is about $650. I've worn contacts of one kind of another since age 19, and started wearing glasses in the second grade. My job involved working with numbers on a computer all day for the County Treasurer's Office. Fortunately, I was able to make it to retirement after 37 years of service (started right out of high school and went to college night)

    1. Hi Elaine, Any keratoconus patient could share their experiences on this blog. if you would like to participate, please send your article and photos to our email: story@keratoconusgroup.org

  2. Living with KC is, simply putting, a curse. But I always remind myself that it could have been far worse. I have no ambition, to be honest it's because of KC. I try to understand my limitation and make myself happy with as much as I can get. But still sometimes it's much harder to deal with. I know you have been suffering for more than my age, but still don't lose hope. Live your life as much as you can because that's what GOD planned for us. We can't change that, might as well enjoy it. And living with frustration is no fun. I like to believe a quote I modified, " Whatever doesn't kill you makes you stronger", even if that may not be true. Good luck

  3. Now someone dare to say "thank God anyway"
    because fuck him

  4. I was diagnosed at the age of 14, this too sounds like it could've been written by me! I'm 31 now and don't dare drive at night in unfamiliar areas causing me major anxiety. Driving in the rain at night is an absolute no no! The only thing I have is glasses and my right eye at its best with glasses is 20/200 and my left eye was 20/40 that was about 5 years ago. I don't have insurance so haven't been able to go to any kind of dr. Keratoconus has definitely made things a lot harder on me. I have 3 young children that I can't take to the beach alone because once they're in the water I can't tell which kid is mine it's horrible not being able to enjoy the simple things with them. Another big one for me is coloring, I found out about 2 years ago that I can no longer "color in the lines". I got as close as I could and was trying to color with my son and could not stay in the lines, it was devestating! Cleaning is also a task, I'm always missing the smallest things that I can't see but it's very noticeable to others. Makeup is another no bc I can't see what I'm doing. I really wish there was something I could do!

  5. This felt like you were telling my story. I was diagnosed when I was 19 y/o. Had 2 corneal transplants of which the last one in the same eye was placed incorrectly. I now have 2 small cataracts in both eyes. I am now wearing scleral contact lens in my left eye, soon I will have one for the right eye. The lens works good but there a few steps I have to take. Having keratoconus has caused me to live in a very narrow lane in life. I am at times afraid to do things. I did not realize how much power I gave to Keratoconus.

  6. I was diagnosed with KC about 10 years ago (also dx with cataracts last year). KC is definitely not a walk in the park. I have other autoimmune diseases too .... multiple sclerosis, autoimmune thyroiditis, asthma, allergies....I could go on and on. Much of it caused by toxic exposure while in the Army. Gotta keep moving forward and try to stay positive ...otherwise it can all become too much. Sending a prayer For you.

  7. I know exactly what you are going through, hang in there.

  8. Amazing how we all can relate to this same story.
    25 years for me, diagnosed in 1988, both eyes. Cataract surgeries in 2012 and total frustration trying to get refitted into contacts afterwards, then vision got so bad I was ready to stop driving and quit my job in finance. Blurriness, nausea and frustration lead to focusing on researching a solution.
    Steven Holcomb, Bobsleigh, 2010 Olympic Gold Meal won for the United States in Vancouver. His story about his blindness from Keratoconus and how he found Dr. Brian Boxer Wachler in California.
    I made the phone call in 2013 and traveled that April to CA for my 3 day visit for recommended procedures, INTACS and Holcomb C3R Collagen Crosslinking, Epithelium ON. We went sightseeing at the Santa Monica Pier...I could clearly see the dolphins offshore. The following year 2014, I returned to Dr. Brian for CK Conductive Keratoplasty to tweak my vision. 4+ years later, my vision is good and I no longer wear contact lens or glasses. My vision at its worst was 20/100 and today my vision is 20/32 R 20/40 left. I'm on an annual schedule with my local ophthalmologist...no more 3 or 6 month visits. He was very pleased with the health and vision results of my California procedures.

    I took a leap of faith and I'm very pleased with my decision. I made it a priority to get my life back after struggling for 25 years. I applied for a Care Credit loan and submitted all the paperwork provided by the Boxer Wachler Vision Institute and was partially reimbursed by my insurance company.
    I hope and pray our shared stories will help others to find their own answer.
    RIP Steven Holcomb and Thank You for sharing your story...forever grateful !

  9. I was diagnosed when I was 11, but had it as early as 9. By age 14 had my first corneal transplant in my right eye, at 19, got the left eye done. Honestly it was the best decision I made having KC. Over the years i had some issues by no full rejection. About a year ago my glass prescription was staelrtung to go outside of all the testing machines and the kc was still progressing in the rest of the corneas that wasnt replaced. So I found the corneal aprcailist that originally did my eyes (i love him, hes awesome) and he was able to prk surgeries my vision from 20/100 to 20/20 in both and 20/15 in my left eye, and 20/40 in the right, i still have some of the kc effects like the glare, halos, glow, and my corneas are still hazy from the surgeries. It was totally worth it to get this vision. And in may, he's going to look at th right eye and see how much clearer he can get my vision to.

  10. The last post was me, im 32 btw and turning 33 in june.

  11. Hi I’m a 40 year old male living in New York and been using contact lenses since I was diagnosed with keratoconus at 13 years of age. I’m glad I came across this website, so many stories are very similar to my everyday life. I also had a corneal transplant when I was 17 years old; I was able to go without contacts on my LEFT eye for 10 years, and because of the loss of vision had to eventually go back to using it again. The limitations in regards to everyday life are countless and some doctors don’t help at all (optometrists to be specific) lack of patience at the time of the fitting can be frustrating.
    It always helps to remind myself that it could have been worse.

  12. I have been recently diagnosed with Keratoconus aged 29. I didn't even notice the effects or deterioration of Keratoconus until my better eye started showing symptoms, and even then I missed the early signs because of my living situation, things like light sensitivity I have had for ages. Those early forgettable signs I just put down to my situation of never sleeping well, being nocturnal and being housebound for long periods of time due to mental health.

    My recent diagnoses said I had advanced Keratoconus in both eyes. One eye is scarred with lots of distortion with all the typical advanced symptoms of the disease, how I didn't notice this sooner is beyond me. The Ophthalmologist tried to cheer me up on that front saying my better eye compensated for the worse eye for a long period of time, even still if I wasn't so depressed and full of anxiety I would have spotted the problem much sooner. This progression is clearly on-going as my better eye has just recently started having ghosting vision vertically which is getting worse and halos around lights. The slight blur, the brightness / faintness of everything and all the other symptoms may have already been there in that eyes for a long while, now with both eyes open it can be quite a mess, if I close either of my eyes it's even worse. I didn't have any aspirations or are were going anywhere in life anyway, this disease is way more impactful on successful social people i guess. I have refused all treatment options as they include intrusive customised scleral lenses which cost a fortune and surgery, both of which would cause even further vision loss or loss of sight in it's entirety when it comes to me handling it.

    I just added Keratoconus to my little list of problems alongside Autism and Multiple-Sclerosis. I wonder what will develop next. Genetics have not been kind to me either overall appearance wise.