Keratoconus Support Group

Hi, KC is a horrible disease. I have been diagnosed for over 15 years now, and although it doesnt get any better you do learn to cope with it and to a degree it takes a back seat whilst you get on with life.

I wear scleral lenses in both eyes as the regular RGPs just drop out due to the shape of my corneas, and as my vision is so bad without them I wear them for extended periods. As a result I suffer with GPC as I have developed an allery to the lenses.

I have also suffered from ulcers on one of my corneas which has to be surgically taken off as it wasn't healing. Please make sure that you keep your lenses as clean as you can because you run the risk of infection.

I feel like my eyes are very tired all the time too.

I know its really hard right now, but you will be ok, once you get your lenses and you can see clearly you will feel a lot better. You will get into a routine of cleaning them and wearing them and after a while it will just be part of your day.

There is absolutely no reason that you cant have a perfectly normal life and nowadays a good optometrist and a good pair of lenses can give you 20/20 vision.

Take care.
Dawn

Thanks. I have never heard of scleral lenses. What are they? My left eye is my problem eye. We have had about 10 or 11 fittings and still no luck. He is going to give it one more try then look into piggybacking. What I do not know is if it will be healthy for my eye having a RGP that is the wrong fit over a soft contact. It seems like that could create scaring sooner. I just don't really know what to do about it. I was thinking of just not wearing a contact in that eye. It is my better vision eye 20/70 and I think I could deal. My right eye is 20/200 so I need a contact in that eye. What would you do. I just really need advice from someone other than a doctor. Because they do not really know what it is like to have this.
I know I will get use to some parts of this. I just hate the unknown. I like to fix things and my frustration comes from having my hands tied. I can not change my diet or lifestyle to improve this and it bothers me.
I will be fine. I have a great husband who is very compassionate to my needs in this.
Thanks for listening to me ramble!!

Hi, scleral lenses are big lenses that fit over the whole of the eye and sit under the eyelids, they are filled with saline before inserting which creates an artificial lens. They are awesome because they can be fitted to any eye as they dont sit on the cornea. However they are very epensive, mine were AU$1300 each, but in my opinion they are worth every cent as they give me a realtively normal life.

Is your doctor a KC specialist? I would say that after 11 fittings and still no success I would go and find another doctor who is a specialist in this field.

I am not a fan of piggybacking although I do know people who have done it successfully. The lenses will still need to be good fitting though, and you will have to hassle of two lots of lenses to keep clean.

I would definately get a lens for both eyes, I have had days when I can only wear one lens and its awfully, you feel really unbalanced. Kc will not go away no matter what you do with lifestyle of diet so we owe it to ourselves to find the best eyecare provider to keep our corneas as healthy as we can for as long as possible. You shouldnt have to settle for one lens, you need a good quality of life and there is a doctor out there who can give it to you.

With support, friendship and a little bit of understanding you will be fine. Google scleral lenses or mini scleral lenses and go talk to your doctor about them. For a lot of optometrists they are considered old fashioned in this day and age where disposable lenses etc are fashionable, but they are very widely used in the KC community and have helped a lot of people get good vision to lead normal lives.

Take care, and very good luck, I look forward to hearing how you go and if you want any more information or would just like to chat, I would love to hear from you.

Dawn

I wonder why doctors do not mention this lense. Does medical insurance cover this at all?? Mine covers the RGP but I wonder if they would cover those.
My fitter seems to know what he is doing. He told me that the peak is in a spot that is hard to fit.He also said I was one of the hardest he has ever tried to fit. He has sent my topograpy to another lab and we have had 2 sets come back not good. I go in for my next set on wens. I am hoping it works. The eye care place I go to is recommended by almost every eye place and doctor I have talked to. I guess I should ask around some more. It just seems like they all point back to them. Short of going up to the University hospitals eye place I can think of no others!!
Do you know what your cornea thickness is and the number of your peak?? I would like to know what others have. I kind of feel like they do not want to worry me so they sugarcoat it. Have you ever thought that? Maybe I am just weird. When I first went in they said oh it is pretty mild without even taking alook at the topagrapy I brought in. I went in for laser surgery which is how I found out about this. My cornea was so thin it did not pick up on one of there test. That seems bad to me!
They finally did one of there own 3 fittings ago. I guess the whole thing bugs me. Sorry to ramble on and on. It is just nice to have someone answer some of my questions I am 28 and feel like am am so young to be going through this. But you were younger than me when you found out. So I guess I should count my blessings!! Thanks for being willing to talk to me!!

I think the fitters dont mention the lenses much because they are expensive and also because there are not many people that make them. I see one of the best KC Specialists in Australia and he makes them, but sometimes he needs to get them from a scleral lens guru in the UK, it depends on what eye he has to fit. I know there are some places in the States that make them, I guess you need to speak to your doctor. In Australia the insurance only covers a tiny proportion of the cost, hardly worth getting back, so I had to pay for most of it myself. Yeah I understand about the peak being in a bad place for a lens fitting my left eye is like that. I was sitting in a board meeting at work one time and both lenses fell out of my eyes and rolled across the meeting room table LOL every ones eyes popped out LOL I never wore RGPs again after that. The sclerals can be fit to bad eye shapes easily, and never fall out so its awesome, I can swim and play sport or with my daughter without fear of getting dust under them.

Not sure of my numbers at the moment as I havent had a topo for a few years, my left eye is a lot worse than my right, but without lenses in I cant see anything at all, I am technically blind, just see really hazy blobby stuff. With my lenses I see very well in the day time although I find it hard to see small detail hence you might spot the odd typo, but my night vision is not good at all because of the lights and starbursts etc.

I am 38 now, so hopefully my eyes will change less and less as they do say that it slows down over about the age of 40.

If your eye care centre is recommended they obviously know their stuff, stick with them and you will get there. You will be amazed at how at good fitting set of lenses will change your life.

Before you went for Lazik did you have really bad eye problems?, because I would think that if you eyes were that bad you would know about it before it got very severe because advanced KC cannot be corrected with glasses or soft contacts.

Take care & have a good day

Speak soon
Dawn

One day I was reading. (I love to read) and I noticed my eyesite being bad. I went in for an eye test 5 years before because I felt my vision was not crisp. I had 20/20 in both eyes and have never worn glasses or contacts. So I defently nticed it right away when it got bad. It was like overnight!! So I went to the eye doc and he said I needed glasses. well going from nothing to glasses to 20/200 in my left it was horrible! I got such bad headaches I was like forget it!! SO I went in for laser. I was pretty upset when he told me. I gave the other doc office an earfull because those glasses that I did not need cost me $500. luckly I got a refund and a new doc!!
So here I am 4 months later and just wishing I had contacts that I swore I would never wear before I found out I had KC!! LOL I guess I was wrong!!
I am going to ask about those lenses. It is alot of money but like you said if they work that would be great!! Can you get them for one eye?? My right eye fits. Or would it be hard having 2 differnt types??
Thanks again!! I swear I have a ton of questions!! You are awesome to answer so quickly!!!

Hello ..... yes you can wear a scleral in your worse eye and an RGP in your easy to fit eye. I have a KC friend who I met and because of my lenses she now wears one Sceral and one RGP. She said that its the best money she ever spent because it has given her a life back. She was dreading the thought of never seeing clearly again and now she can :)

I remember when I was diagnosed with KC, I was stunned and tried to find out every thing I could about there. THere used to be a fantastic support group on line which has since closed down, and I made some awesome strong friends from all over the world and we all coped with it together which really helped. I am still in touch with many of them now, and it will be life long friendships as we have been through so much together. So anything I can do to help you I am happy to because I know how important it is to have someone to talk to when no one else knows what you are going through.

Dawn

OMG I just read that back and there are heaps of typos ..... sorry :))

Good to know. I will ask my eye doc!! No worries about typos. I am way worse!! But I am just a bad speller!! How long can you wear those lenses?? How long after wearing contacts did you start getting ulcers??
What is GPC??
Have a good day!! thanks again.

Hello,

I used to get ulcers regularly when I was wearing RGPs because they were not fitting properly as my eyes were changing quickly. Its really important to have a lens thats fits well or it can do a lot of damage to an already fragile cornea.

I wear my sclerals all day, they go in at about 6.30am and come out when I go to bed whatever time that is. Years ago sclerals were not considered to be good for wearing for long periods because they were not made of a good material for good exygen flow. Nowadays they are made of a really good gas permeable material so thats not an issue anymore.

GPC is giant papillary conjunctivitis. I developed this when wearing RGP lenses, is an allergic reaction which causes the eyelid to thicken and get lumpy, red and sore underneath. Its very painful, and unfortuantely because I have worn lenses for many years its something that will stay with me. I use an eyedrop twice a day to keep it under control. It has acutally been heaps better since I changed lenses and also the climate in Australia suits me too. It flares up occasionally but I dont have it all the time anymore.

Have a good day too!
Dawn