What Next??

Feel confused as glad we finally have a diagnosis but bit numb about it all really.

Any support welcome.......

Thanks

Emma

What kind of doctors are doing testing? It's not necessarily genitic, but can be. I Have KFS and didn't know most of my life. Every body had different symptoms. I don't now how sever it is and this is all new to me too. I wish there were spoecialists for this.We're all in this together.

Toni

The only thing that I can tell you is to do a lot of research! Although there are many doctors out there, not many of them know what KFS is. There are many different things that can be associated with KFS. For instance I also have Platybasia, Kyphosis, Congenital fusion of C1 & C2 plus C5,6 & 7 are fused together. I also have Sprengles disease. But just as you, I am looking for answers. I do however, understand what your husband is going through. What I do know is that He has a wonderful supporting wife! The more knowledge that you obtain about KFS, the better you will be at helping him through it.

My Chiropractor found my condition and has been assiting me in educating myself on the subject. Get books, look online....where-ever there is info on KFS read it!

Always here for support!

Tonya---Michigan momma with KFS