Klippel-Feil Syndrome – find out more about this condition and help raise awareness!

The Klippel-Feil Syndrome blog is sub-division of our ongoing series which seeks to assemble general awareness of rare or orphan provisions.  For more information on the nearly raw conditions we have covered in the gone by please have a look here

Today we are apprehension a close look at a congenital condition called Klippel-Feil Syndrome.  The US body of executive officers’s site Genetics Home Reference suggests that Klippel-Feil Syndrome is “estimated to occur in 1 in 40,000 to 42,000 newborns worldwide”.  Slightly other women are likely to be effected than men

Klippel-Feil Syndrome is described in the same proportion that the abnormal fusing of two or other of the bones (vertebrae) in the backbone.

The major effects on people through Klippel-Feil Syndrome are:-
a) Limited impulse of the neck
b) A with little elevation hairline at the back of the contrary and
c) A short neck

Only right and left 50% of patients will have every part of three features.

Typically with early treatments, race with Klippel-Feil Syndrome have a weal prognosis.  Though, of course, they consider to be careful regarding neck injuries.  Typical treatments are one and the other surgical (such as spinal fusion) or the practice of physiotherapy.

One of the reasons as being selecting Klippel-Feil Syndrome as unit of our rare diseases was a newly come blog on The Global Genes textile fabric Site

Here a Klippel-Feil Syndrome unrepining named Sharon Rose Nissley told her account about this rare condition:-

“As a 41-year preceding patient with the congenital rare malady Klippel-Feil Syndrome (KFS), pain is a vertical part of every moment, every promised time.  Because everyone with this disease has various portions of their cervical spine (neck) fused in concert, we have different symptoms.

I was not diagnosed till the age of thirty-eight; in addition, after having several knee surgeries at the same time that a child, due to deformed knee joints, the diagnosis made sense to me. I was told through . my orthopaedic specialist,  ”KFS is not the diagnosis you have occasion for.”

I thought, eh, we can form this out. In our day and epoch, where we have access to treatments, ways of fixing things, and greatest in number assuredly there would be ways to soothe pain; I will eventually get back to usual.

I was wrong. After seeing countless Neurologists and Neurosurgeons, and last night stays in the hospital for suffering, the only advocate I currently take maintained by my side, is a council certified Headache Doctor. I take medications towards nerve pain, but the pain persists from beginning to end my upper body, as well considered in the state of other neurological symptoms that make each day a roller coaster.”

She goes without ceasing to explain about the limited result of support and information which is available to people with KFS.  To clear up this problem she has just launched the Klippel-Feil Syndrome Alliance which is a new page on Facebook whose objective is “to fight this rare disorder and other related spinal deformities considered in the state of well as other physical anomalies”.

We would like to ask all our readers (if they are members of Facebook) to tend hitherward fans of the page.  You be able to do so by clicking here.  We waiting under the possibility of fulfilment that over the coming months will become a key focus for patients with KFS and their family members.

Please feel free to use the comments part to add any videos or links you cherish a thought of other readers would find of sympathy.  Also do use the comments portion to tall you KFS story.

You may have existence interested in submitting your own blog to The Patient Experience.  If likewise please click here for more advice.
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Tags: body, congenital, Feil, information, Klippel-Feil Syndrome, look, Typical treatments

Category: Pain management