I would possibly class my symptoms as being somewhat mid-level (although that's debatable). I have curvature of the spine, vertebrae fusion, Sprengel's Deformity of my left shoulder-blade and slight neck webbing on the left side. I possibly could attribute other problems to the disorder too, and there will no doubt be other health problems later in life.
So why am I telling you about this? Because I have found that very few people know about the disorder (including doctors) and very few people have met anyone knowlingly having KFS. I was fortunate enough to meet 2 other people with KFS a few months ago. It's an interesting experience to meet people who have had similar health problems, similar problems in their childhood, and similar life problems - all due to something incredibly rare.
I have found that people become much more accepting of your abnormalities when you can label them. I have also found that those who are more accepting are generally those who ask "so, what's wrong with you neck?" - although this is not always the case.
I started up an Australian KFS email list a couple of years ago and we have about 4 people on it at the moment. If you live in Australia and have KFS or have a child or relative who has KFS please feel free to join KFS-AU. There is also a worldwide (although the majority are Americans) email list KFS Circle of Friends.
While I don't have it as hard as some people (I still have all my limbs, digits and senses), the disorder has inadvertently taught me many things about life and many things about human nature (particularly superficiality). I used to dream about having radical plastic surgery or about waking up one day in someone else's (perfect) body - but now I accept KFS as part of who I am.