First of all I want to say this site is great, so much information, and I think it is so important for everyone to be educated and involved!
My fiance was diagnosed with Keratoconus when he was 14, and at the time he was uninsured (he grew up with a single mom and she did everything! Except insurance I guess). So now, from what I understand, he is not eligeable for coverage since it is now a "pre existing condition". Which frankly is rediculous, he was 14, what the hell was he supposed to do?? He is 26 now and has paid for everything out of pocket, but he has had a very rapid/severe case of Keratoconus and will probably need corneal transplants in the very near future. He is at the last availible prescription for contacts. (from what I understand that is his best option becasue of the way his eyes have progressed and other things). He is obviously worried about cost, and the surgery itself. He doesn't really come to these sites or research much like I do. I'm in healthcare so I'm trying to help him navigate "the system" and research options, so I'm trying to help. But if anyone has any advice at all it would be greatly appreciated, mostly on the insurance end. If anyone can share their health insurance experiences with keratoconus that would be more than wonderful. And any advice at all, thanks!
Its much easier today than a while back for a Kcer ! there are many options to consider, from Scleral lenses, to Intacs to limited Topo PRK with CXL, implantable lenses etc, make sure all has been evaluated for your loved one, it may take a while to find the right Dr and you may have to travel.
Insurance, i'm told can vary state by state, and by the way you should have a pm from another member.
Thanks so much for everyone who has replied! We have gotten a lot of good news. Keratoconus is no longer a cosmetic condition (it was here up until a while ago apparently). And in Colorado, they have a fairly new law that they can only deny a pre exisiting condition for 6 months! Which we found out about because of some wonderful people on this site. So he will have corneal transplants in the next year, and they will be insured. And until then with contacts he should be able to see and stay fine. (He is legally blind without them).
He has some new contacts, which he has had some trouble with, but he can see better. He has had a LOT of pain, but we see the doctor the day after tomorow and hopefully get that straightened out. She thinks he may have scrached the cornea, and so he is only wearing one contact until we see her. I really hope that goes well, he has a lot of pain troubles. If there was one thing I could help him with, that would be it. (And u know, take away the Keratoconus, but the former seems more likely :)
To be straight with you please consider the Crosslinking treatment if there is any change in the thickness of the cornea, progression of Keratoconus can be checked with corneal topography scans to know more closely if progession has taken place before vision is effected if done properly and by testing the thickness of the cornea.
Hard lenses can be hard to wear, pain comes as standard in the early days of getting used to them :) sometimes it can be uncomfortable from time to time, but it also does depend from person to person, from contact lens to contact lens and from fitter to fitter what can be acheived in the end, usually it will work out fine.
Hi there everyone! I have/had Keratoconus in both eyes for roughly 15 years - both eyes reached a point a few months ago where they were so steep and intolerant to contacts.
I ended up getting C3-R, Intacs, and CK and my eyes are seeing great results...the health of my eyes and the integrity of my corneas/eyes is improving day by day.