Wildervanck syndrome, also known as cervicooculoacoustic syndrome, is a
rare genetic disorder that primarily affects females. The disorder is
characterized by a skeletal condition known as Klippel-Feil syndrome
(KFS); abnormalities of certain eye (ocular) movements (i.e., Duane
syndrome); and/or hearing impairment that is present at birth
(congenital).
In individuals with KFS, there is abnormal union or fusion of two or
more bones of the spinal column (vertebrae) within the neck (cervical
vertebrae). Duane syndrome is characterized by limitation or absence of
certain horizontal eye movements; retraction or "drawing back" of the
eyeball into the eye cavity (orbit) upon attempting to look inward; and,
in some cases, abnormal deviation of one eye in relation to the other
(strabismus). In some affected individuals, additional physical
abnormalities may also be present. In most cases, Wildervanck syndrome
appears to occur randomly for unknown reasons (sporadically).
My daughter has Wildervanck, Duane and KFS. I would love to form a email support group with any others involved with any or all of these rare syndroms. Email Christine at purplequeenmail@gmail.com put support group in subject line.
ReplyDeleteMy son has all three also...Im looking for a support group.
ReplyDeleteHi Joy and Christine,
DeleteI have Wildervanck's syndrome (which includes Duane and KFS) and am looking for other affected individuals to be included in a study to identify new mutations associated with this syndrome. If you would like more information please email me at kylem.11@hotmail.com.
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ReplyDeleteI have wildervanck syndrome and others too. Interesting to know people who born with the same condition as me. Is your son profoundly deaf?, I was wonder if anyone who born with wildervanck that have cochlear implant? I've been told I can't get offered accept for cochlear implant because I born diagnostic with wildervanck syndrome my nerves are dead inside ears but how come I can hear it with my hearing aids on? But my ears has becoming worse hearing loss worse now than ever when I was young it ok but now it gone below down which I find it disappointment I would like to have cochlear implant but can't have so, If any parents who have child that born with wildervanck wonder if they able to have children in the future? The genes say if your daughter have a girl it could be 50/50 to be like her, if it's a boy it won't be survive at birth, wildervanck have very lethal to baby boy, so look at me I born with wildervanck and had a wonderful health little boy ( no sydnromes) he is fine and hearing too, incase if people wonder asked if wildervanck can have natural children in the future and etc
ReplyDeleteHello, my name is Annemarijn and I am 17 years old. I live in the Netherlands (Holland). I have also Wildervanck syndrome and I am looking for other people who want to share experiences and stuff. In the Netherlands I couldn't find anybody else with Wildervanck. I have scoliosis, I am deaf at my left ear and I have klippel feil syndrome (i'm able to turn my neck just for 45 degrees) and i have a duane in my left eye. I would like it to be in contact with others.
ReplyDeleteFor contact: annemarijnvdalen@gmail.com
I am deaf in my left ear since birth, I have duane's syndrome as well. I've had 3 ocular surgeries. I'm a 38 year old female
ReplyDelete