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.