Cystinosis - How serious is it?

[SariesNightly]

My friend in WA is about to become blind. Please, If you live in DC or know about cystamine eyedrops please help.

Since this is the science section, if you are a pharmacist, doctor or physician please tell me why the eyedrops have been in testing for so long (since 1986!) and is still undergoing tests!? What are the side effects?

Is there light at the end of the tunnel or is this a terminal disease?


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Okay heres the story. My eyes are very messed up from my illness. I used to get eyedrops to help them but the FDA doesnt make a lot of money from them so they stopped producing them. Without them my eyes hurt like hell ( I can barley stand to look at my computer screen) an d Im gradually going blind. The thing is, I CAN get them. If I fly all the way to DC. From WA that is VERY expensive.

SNIP

What is DU? Thax very much, that should be a bighelp no matter who they are. Im not sure how good of a case it is. Like I said they ARE available, but it costs an arm and a leg. To be more specific, we have to fly to DC to take part in some research study At the NHI. ( The eye drops are 'experimental, however they have been for years and so far theyve done nothing but good) it would be a big help even to get it so that we can some how take part in that study locally and get the eydrops shipped to us..something like that.

SNIP

Thier called Cystamine eyedrops. What they do is deterioriate cystine crystals which up build in the eyes and damage the cornias and eventually lead to blindness.
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