Hello Sir, I am from India , my younger sister a 28 year old girl woman , was diagnosed with the syndrome 5 months back. No body knows the cause of the disease as some day it is because of genetic or environmental factors or drug induced. We too have been devastated by the problem and are going through immense pain. I am also planning to start a blog or something to raise awareness about this rare disease. If you have any ideas on it , please share. I wish health to your daughter and her children.