What it is.

Cystinosis.  The word makes me feel sick to my stomach.  To read it, hear it, or say it...  I was  desparate for answers.  It is rare, oh so very rare.  I did Google the hell out of it.  I needed answers.  I compare the feeling while researching, to standing in a crowd, yelling for help but no one could hear you or even acknowledged you, no matter how loud you would scream or how desparate the plea.  Nothing, just silence.  Mostly, I would find the horrible ways this disease would effect the body.  God, not that sinking feeling again.....