Maybe someone can help me this time...rare eye disease anyone?

Does anyone have any connection to the eye disease keratoconus in any way shape or form. You had/ have it, you know someone who had/has it. I don't care but I hate feeling like I'm becomeing more blind everyday and not having anyone to compare or talk to about it. Please don't tell me to talk to my doctor because I've done that and it went no were and I don't want to switch cuz he's really good at what he does, and my mom has been bugged, annoyed and pestered and still wont help me. I'm 19, and feeling like I'm going blind. If you know someone, could you please email me or leave an e-mail address I can email, if so there aren't words that can describe how thankful I'd be.

My doctor/ optomitrists job is to make me see as best I can, not diagnose diseases. I asked my mom about that and she said we'de have to go see someone else for that. He's gotten me seeing 20/15 with hard lenses so he doesn't see any point in getting my eyes checked because my vision is correctable.

If you say talking to your doctor went nowhere, how can you say that he is really good at what he does?

Get a second opinion.

Well I do not know anything about it but good luck.

Hi
I don't know anyone with Keratoconus, but my son who is nine suffers from a rare form of RP. He is legally blind now. all I can suggest is to maybe find a society for visually impaired people, where you can meet other people going through the same. Try contacting the RNIB see if they know any local groups. My son has gained such a lot from our local blind society that I would really recommend it. Speaking from experience your mum is probably feeling just as lost as you are at the moment. So try the RNIB and see if they can help you. Hang in there, and I hope that things will start getting better for you .....

Keratoconus is not actually that rare, about 1 in 2000 people has it. It is a genetic disorder that manifests in late teens/early twenties with thinning and distortion of the cornea that causes blurred vision.

You will not go blind from keratoconus. Vision can be corrected with glasses in the early stages but rigid contacts are needed later. A small number of keratoconics may need a corneal transplant.

See the link below for the National Keratoconus Foundation, they have an online discussion and support group.

You could also ask your doctor if he could ask other keratonic patients if any would be willing to meet with you and discuss the condition.