Keratoconus Support Group

Keratoconus is a degenerative non-inflammatory disorder of the eye in which structural changes within the cornea cause it to thin and change to a more conical shape than its normal even curve. Keratoconus can cause substantial distortion of the vision, with multiple images, streaking and sensitivity to light all often reported by the patient.

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Depression

I find since I have been diagnosed I dont enjoy going out anymore. Ive had bad luck with the eye drs and when I go somewhere Im so stressed driving from all the glare and streaks a halos. The sun makes it so bad too. I come home and cry which I know it silly and self pity but I just cant seem to adapt to this eye disease. How do the rest of you cope with this can you give me some ideas

Replies

deleted_user
deleted_user

Aliciabel, you are not alone. I also suffer from moderate to sever keratoconus and find that it has drastically changed my life. I am currently 25 and have been dealing with keratoconus for about 8 years. I also have pretty bad astigmatisms and therefore cannot get vision correction from glasses. So I am forced to try out specialty contact lenses and have tried several but they all fall short in correcting my vision. 20/30 vision is the best I have had since my teenage years in one eye and 20/40 in the other. My corneas are in a constant state of discomfort because they are always scratched or irritated from contact lenses. It is a catch 22, wear contact lenses to be able to see but irritate your corneas, or don't wear them and you are essentially blind. I find that I am extremely light sensitive all the time and cannot go outside most days without sun glasses on. I love being outdoors but find that I dread sunny days because I know being outside is going to be a struggle. Some mornings it is so painful I almost cannot even drive into work and find myself so frustrated and depressed. The thing that keeps me going is the realization of how precious still having any eye sight is. I imagine blindness and would take this pain everyday just in order to be able to see. Keep your head up. Keratoconus is becoming a much more well known condition and new technology and treatments are being developed all the time. My best suggestion is to find a good doctor that specializes in keratoconus and work with him/her to correct your condition as much as possible. Keep trying new lenses and find something that works for you.
deleted_user
deleted_user

Hey, first things first, agreeing with my predecessor, you are not alone! I've recently ran into a terrible stroke of luck with this fiend of a disease. To make a long story short, I'm 19 a week out of my second surgery (a corneal grapht) with my right eye teetering on an epathilial breakdown. The best advice I can give you, from what is personally helped me; enjoy the smaller things in life, yeah we might struggle to focus on light, but doesn't mean we can't enjoy the vision we have. Take in your surroundings, appreciate the day for its beautiful blue sky, the lush greenery, a breathtaking sunset. I've also forged a bond with my music, having to rely on my ears a lot more, I find my music style (a heavier metal) to be helping, emotion through music is a powerful tool of support. Also, on those days where it just gets to much ( which trust me, I know can happen) just get a big permanent marker and some thick paper and just write! All your feelings, angers emotions frustrations. Hell it might not even be coherent to anyone but you, but that's all it needs to be, getting that frustration off your chest might be what you need. Hopefullly you find a fantastic doctor, like I was luckily able to do, and your condition doesn't worsen. Feel free to get in contact, I'd love to chat.
deleted_user
deleted_user

Hey, first things first, agreeing with my predecessor, you are not alone! I've recently ran into a terrible stroke of luck with this fiend of a disease. To make a long story short, I'm 19 a week out of my second surgery (a corneal grapht) with my right eye teetering on an epathilial breakdown. The best advice I can give you, from what is personally helped me; enjoy the smaller things in life, yeah we might struggle to focus on light, but doesn't mean we can't enjoy the vision we have. Take in your surroundings, appreciate the day for its beautiful blue sky, the lush greenery, a breathtaking sunset. I've also forged a bond with my music, having to rely on my ears a lot more, I find my music style (a heavier metal) to be helping, emotion through music is a powerful tool of support. Also, on those days where it just gets to much ( which trust me, I know can happen) just get a big permanent marker and some thick paper and just write! All your feelings, angers emotions frustrations. Hell it might not even be coherent to anyone but you, but that's all it needs to be, getting that frustration off your chest might be what you need. Hopefullly you find a fantastic doctor, like I was luckily able to do, and your condition doesn't worsen. Feel free to get in contact, I'd love to chat.
deleted_user
deleted_user

Aliciabel, I am the same way. Everyone I know doesn't understand how hard the simple tasks are. I have a very hard time driving at night because of the streaks and halo's. I live in Germany and they don't have street lights so it poses a big problem. The photo phobia is another problem I deal with. I had the cross-linking surgery a year ago and according to my Dr. it was semi-successful. It slowed the progression minimally. I'm scared of going blind. I tend to spend a lot of time just staring off into space and trying to take in everything before I am unable to.
deleted_user
deleted_user

Hi I don t even know how to start or what to say exactly because I m really confused by this condition called Keratoconus,how it happened to me I don t know but it did and it s hard also it can be depressing sometimes,especially since you don t have a job and you don t know what kind of a job it will suit you with this condition,I mean it s really hard to find a job being 100% healthy,I don t know even what to look for,and nobody even tries to help me so it could get depressing,but I think if I would find a job that I would be comfortable doing I would not be so depressed because I m not so scared about this Kc thing,eventually they will find a solution for Keratoconus,I tried cross-linking and it even improved my sight a little bit,but of course the symptoms are still there,at least Kc is not progressing at this moment so for now it s ok.So most important thing for me is to find a job and writing all this helped too so Alicia I wish you well and also to the others that have replied here I wish all of them well and they are right,there are a lot of things that I don t understand about Kc,hope I can find some answers on this forum,don t lose hope people,sorry for the long reply I know it s a stress on your eyes but I feel like I have to say a lot of things
deleted_user
deleted_user

Yes and sorry about this other reply but I forgot to say that I have finished College when this condition was getting worse,of course at that time I didn t know what it was and it was better this way.What I m saying is we cannot let ourselves taking down by this thing,we can still do things we desire
deleted_user
deleted_user

Hi,
I feel the same way, I was used to going to the gym daily, doing zumba classes, swimming, and I teach third grade, and was recently placed on disability/medical leave so now I will not be able to see my students before summer is out. Seems that the cornea transplant has changed my life so much, I almost feel like I should have never done it. All I do is sit home rest, with my eye patch on, I cant do very much because I have a contact over the new cornea and for a person like me that was ALWAYS active this is very hard on me. But I need to stay positive and so do you. Im sorry I wasnt much of a help to make you feel better but just stay positive things will be better!
deleted_user
deleted_user

HI, I have just joined. I was diagnosed with Keratoconus in both eyes, approx ten years ago, although my left eye is deteriorating quicker than my right. I was a very late diagnosis at the age of 35, which is apparently unusual,

My specialist has tried evry contact lense available, but I have huge allergies to these, causing Hypoxia very quickly, I have various sets of glasses, but all are a struggle at varying times of the day. I get the headaches, sore eyes, and constantly need to rub my left eye. I am still allowed to drive, but am begining to find this is not as easy as once was, espevially at night. I have regular falls at night when I move from light to dark environents, but many people do not understand the daily struggles.

This is very apparent with my boss. I am a social work manager, and am expected to do lots of computer work. I have Dolphin supernova at work on the computer, but whilst this enlarges, and changes screen colours, it also slows everything down, Fo the past year I have been telling my boss how much I am struggling, and it was clear to many people, that I have increased bouts of depression. whilst friends have been supportive, my boss does not seem to get it, and has made my life a living hell, to the point I recently mucked up, and may now lose my job. I accept i did wrong, but due to many other pressures.

I am just preparing a case for employment tribunal, and wondered if anyone has info regarding office based difficulties, work pressures and / or depression. My GP has been great, but I need to get as much info and evidence as possible.

Thanks for eading, and heym despite so many difficulties, I still manage to do lots of amazing things, but it is all a bit harder.

any info would be great,

Thanks very much, Take care. x
deleted_user
deleted_user

Ps. Excuse poor spelling and grammar. Using a small screen tonight, which is not easy. oops. x
deleted_user
deleted_user

Wow so many people going through the same thing!! I got mine very late in life I was 53 believe it or not it seems like it hit me overnight. I had a bad bout of eye allergies and rubbed the daylights out of my eyes and I had lost a niece suddenly and cried for months and months and I think all of this factored in.
deleted_user
deleted_user

Hi I'm 15 and I'm at stage 3 Keratoconus. A day doesn't go by where I'm even allowed to feel normal. In school, I have to sit right up to the board and I still can't see without squinting. My classmates make it a hobby to make fun of me, my teachers outwardly show pity and even my own family members ridicule me. It's over bearing. The opthalmologist recommended a cornea transplant. My small Caribbean island doesn't have the technology so I have to go somewhere else. That's money that I'd hate to make my parents spend. But, I try to be optimistic - I still can see, right?
deleted_user
deleted_user

Hello. I was diagnosed with Keratoconus 8 years ago. I had a corneal transplant 2 years ago. Outside of other people with Keratoconus, I felt that other people did not understand the nature of the condition. They stated they understood, but they did not know to what extent not having attention to detail affected me. I was often seen as clumsy and sometimes even drunk because my depth perception was so bad. If your doctor is recommending a transplant, while you may hate to spend the money, it is worth it in the long run. I have spent countless dollars on contacts and glasses with no results. If it keeps progressing, the condition can get considerably worse and also cause pain. If you do not want to get it now, perhaps talking with your doctor to see how soon they recommend you getting it. You can also search the web and talk with your doctor about financial options to fund the operation. Prior to getting mine, I found several clinical trials that would do the operation for free with followup care in an effort to test the effectiveness of a new type of laser that cut the cornea. It was in another area, and I would not be able to travel to attend, so I opted for the more expensive route. No promises, but it is worth looking into. Just be sure to discuss anything you find with your doctor to get medical insight and understanding of potential procedures.