Discussions By Condition: Congenital conditions

I have KFS also

Posted In: Congenital conditions 0 Replies
  • Posted By: Anonymous
  • July 14, 2011
  • 10:55 PM

I was born with KFS & Sprengels deformity.I am 31yrs.old now,i also have a 10yrs.old daughter. I was seen by doctors at Shriners in Tampa,FL.& am truly thankful 2 them.I was born a month premature.I am serverly short (4'2"),but in my case i was born missin' 3 of my vertabre in my neck.The doctors fused my spine when i was 11yrs.old.I have a webbed neck,low-hair line ect...I also had an onset of a cyst on my fusion site 5yrs.after my spine was fused,which causes extreame pain down my arms.Then in 2003 i found out that i now have rotational scoliosis of the lower spine.When i had my child the doctors where worried if i would pass KFS 2 her,but thankfully she is "normal".Due 2 my KFS & my extreame shortnest i had my daughter by c-section,& almost bleed 2 death.Every surgery that i've had something has went wrong.Also now that i am gettin' older,i have noticed that my body is pullin more to the right,which i can feel the streching on my left side.I've also noticed my hearin' is getting worse,& I am gettin' UTI's a couple of times a year..Please if anyone can tell me of a website that i can go 2 for people with KFS,so i can talk with others like me.......Thanks

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