Hi, my husband is 27 and JUST got diagnosed with KFS today. I am absolutely floored after reading about this syndrome, its like the past 7 years are all starting to make sense. We knew he had a lot of congenital problems but no one had ever really put a name to it. 7 years ago he had to have shoulder surgery and after that started having back and neck problems. He was born with a small thumb that he cant bend and one of his arms was larger than the other one and later we realized just by coincidence that he had an extremely rare kidney malformation called bilateral fused pelvic kindey that showed up on an MRI. He then was told he had a spine problem that was causing his vertebrae to fuse and we went on to have C4-C5 fused to prevent further damage. He was told he had severe degenerative disc disease which was also genetic. Recently he started having more pain with more imaging done and they discovered he is completely fused from C2-C7. I am just wondering if any of you have any heart problems because reading about that really worries me and I would think that we would have known by now about that if he did. He has a pretty bad case of this it seems but any information would be helpful, thanks!Reply Follow This Thread Stop Following This Thread Flag this Discussion
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