what is klippel feil syndrome and why is it so rare

The story of natalie

My name is Natalie i am 32 & i got diagnosed 3yrs ago with klippel feil syndrom & because it’s so rare it’s hard to understand i have got 2 boys who i had to explain my diagnosis to which was hard because they asked a lot of questions I’m so lucky to have a wonderful family who while i had to stay in hospital for 4mnths took care of my sons & came to visit me every day. I just wish the uk had.more support if anyone can give support it wouldn’t be so hard