Jan 26, 2007 - 4:50 am
I am a 38 year old female just recently diagnosed with LGLL. I have a 17mo old little girl, so the statistics of 10 year life span and no cure are very upsetting to me. This is such a rare disorder. I am trying to stay positive but since this is so rare, it limits research. I would love to hear anyone elses story who may have this. Even if I could hear from another parent who knows their disease is non-curable. How do you ever get past that horrible feeling?