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11/27/2012 08:08 PM

Klippel-Feil

Pennyray1
Posts: 2
New Member

Hi all , we are very excited to finally find a website for KFS.

We live in South Africa and our 8 mnths old boy Harry was born with congenital pnuemonia , and after further inverstigation it was found that , his c1 - c5 are fused , left and right side ribs are fused , left sprengels Shoulder, left ear has not developed and he is missing a left kidney. does any one know of a doctor in South Africa who has treated this , or has any one had similiar symptoms that we can talk to , to know the best way forward or what we can except for our Harry.

Our main concern is at what age do they correct the Srengels shoulder or do they just leave it.

Thank You for this .

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11/28/2012 10:15 AM
treblig66
treblig66Posts: 461
Member

Hi! It's good to meet you. Hope we can help you find the answers you need! I have a friend from South Africa who has KFS. I sent her a note about Harry. We'll see if she has any suggestions about who to see, etc. She is from Durban. Where are you located?

I know they can do surgery to correct Sprengel's shoulder, but I don't know what age that would be advisable. Maybe someone else has some info on that. My shoulders are only slightly abnormal, so I never had any corrective surgery there. Quite a few of us can relate to the abnormalities that Harry has. Severity of the problems varies a lot from person to person, and at this point, I don't think anyone can really tell you exactly what to expect. For many of us, as we get older, pain is a major part of our lives, but others with KFS have made it into their "older years" with very little pain. It makes working with KFS a real challenge.

Are you on facebook? If so, there's a group we have called the Klippel-Feil Syndrome Alliance that is working on becoming a non-profit foundation for people with KFS. It also has its own website: http://www.kfsalliance.org/. There are also several other facebook groups out there like Klippel-feil chatting! or Klippel feil Syndrome Friends and Family . Though we are very rare, there are quite a few of us out there, and we're getting organized to learn about and fight KFS together!

Anyway, it is good to have you here, although I wish you didn't need us. Will try to write more when I get a chance (at work)!

--Gilbert


11/28/2012 10:40 AM
Pennyray1
Posts: 2
New Member

Hi Gilbert

Thanks for your reply, we live 2 hours from durban , i would love to get in contact with your friend , nice to know someone that lives close by, we found this site through facebook.Wish they could find something to take the pain away , as a mom i wish it was me and not my son.

Thanks for your encouraging words. enjoy work , it is night time here in S.A


11/29/2012 08:48 AM
treblig66
treblig66Posts: 461
Member

My friend didn't have much chance to chat today, but she did recommend that you go to the spine unit at King George IV Hospital. You will probably need a referral from your doctor or specialist to go there, but she thinks that's the best place to go.

I haven't had a chance to talk to her about meeting you or talking to you yet. I want to get her permission before I link you two up.

--Gilbert

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