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The Center for Athrogryposis Treatment Imagine
children unable to groom or dress themselves because their elbows are completely straight and cannot bend. Or children unable to walk with any efficiency because their hips and knees are not only deformed, but
also are incapable of motion. This is the plight of children with arthrogryposis. Arthrogryposis, from the Greek terminology meaning hooked or curved joints, describes not a single diagnosis
but a spectrum of congenital deformities. What each condition shares are the multiple joint contractures, poorly developed and contracted muscles, and limb deformities. There is a
wide spectrum of involvement and severity, from children having only a deformed hand or foot, to those with both arms and legs completely affected. At the Center for Arthrogryposis Treatment,
director Harold J.P. van Bosse, M.D. coordinates a team approach to these complex children. The children are carefully evaluated and followed by both the orthopaedic and pediatric staff. At their first
visit, they are also referred to a geneticist and a neurologist to help establish which underlying condition, if any, may be present. Other specialists' opinions are sought as needed, depending on the
diagnosis. These include cardiologists, nephrologists, and pediatric general surgeons, among others. One aspect of the Center's treatment philosophy is to design individualized daily therapy programs for
the children. These programs emphasize stretching, strengthening and independent functioning, while attempting to integrate the therapy as much as possible into their normal activities. Such program design
requires a hands-on approach by the Center's physical and occupational therapists, in concert with the physiatrist (rehabilitative doctors) and orthopaedists. A full time orthotist
is present to assist with the complex and evolving bracing needs of these children. In some cases, more aggressive treatment, such as surgery, may be required in order to prevent irreparable
deformities. At the Center for the Treatment of Arthrogryposis, the child life specialists and social workers are experienced in coordinating multiple surgeries to maximize their physical effect while continuing
to focus on the child's emotional well-being. In truth, there is very little we actually know about arthrogryposis. In order to help both the individual patient and all patients
collectively, the Center will have a strong research orientation. This includes tracking patients on a sophisticated data basing system, and giving them the opportunity to benefit from new discoveries or
developments as soon as they prove to be safe and effective. Children with arthrogryposis share a unique ability to adapt to their deformities, as debilitating as they may be. They are a very rewarding group
of patients, and we are continually looking for ways to bridge their enthusiasm with improved functionability. To schedule an appointment or to obtain additional information, please contact
(212) 598-2330 or email us at HJD.ChildrensCenter@med.nyu.edu |
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