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Specialneedsnurse.org, Forums:"The information place for special needs. I hope to provide a place for nurses, teachers and parents to find links, articles, continuing education on various developmental disabilities such as mental retardation, autism spectrum disorder, pdd, Rett's syndrome, Asperger's syndrome and so many more. I hope to also provide a place to chat and exchange information regarding nursing, parenting, and teaching problems/issues of children and adults with special needs on the (Click on Bulletin board-) Bulletin Board. " http://specialneedsnurse.org/ipw-web/bulletin/bb/index.php ****************************************************** ****************************************************** ******************************************************
Larsen's Syndrome Support Group, 24Dr.com:"The Larsen's Syndrome Support Group is a self-help group of families affected by the syndrome. The families share experiences and difficulties. The group has some literature available including comments regarding management of problems concerning extremity and spinal deformities from Loren J Larsen. Literature also includes Associated Findings in Larsen Syndrome." ********************************************
Larsen's Syndrome, Gasnet:"Multiple congenital joint dislocations
· Cartilage weakness in ribs, epiglottis, and arytenoids
· Subglottic stenosis, tracheomalacia
· Potentially difficult airway
· C-spine evaluation
· Congenital heart disease." ********************************************
Larsen's syndrome, Question: Please may I have some information on Larsen's syndrome? IAfrica.com:"Answer: Larsen's syndrome describes an inherited condtion in which a child is born with multiple congenital dislocations, a prominent forehead, depressed nasal bridge and wide-spaced eyes. The children have clubfeet, dislocation of both knees, hips, and elbows, and short, cylindrical fingers. Some also have a cleft palate, hydrocephalus and abnormalities of the spine." ********************************************
General Discussion, Larsen Syndrome, National Organization for Rare Disorders, Inc.:"Larsen Syndrome is a rare genetic disorder in which associated features may vary greatly in range and severity from case to case. However, primary features may include multiple joint dislocations; foot deformities; non-tapering, cylindrically shaped fingers; and/or an unusual facial appearance. In some cases, additional features may be present, such as short stature, additional skeletal abnormalities, incomplete closure of the roof of the mouth (cleft palate), heart defects, hearing impairment, mental retardation, and/or other abnormalities. ********************************************
Features Listed For LARSEN SYNDROME
McKusick, UK
Human Genome Mapping Project
Resource Centre:"Abnormal auditory ossicles
Anal atresia/stenosis
Bipartite calcaneus
Broad thumbs/pollices
Cataract
Cleft palate
Cleft upper lip (non-midline)
Club foot/hindfoot, valgus
Club foot/hindfoot, varus
Deafness, conductive
Dislocated elbow
Dislocated knee
Extra carpals
Fusion of vertebrae
Hypertelorism
Hypoplastic or absent fibula
Joint laxity
Malformed uterus
Multiple joint dislocation
Polydactyly/bifid thumb/pollex
Radio-ulnar synostosis
Segmentation defects of spine
Short/hypoplastic metacarpals." ******************************************** ********************************************
Idaho Boy Suffers From Rare Joint Disease, March 10, 2000 (News Story):"Can you imagine living with muscles and joints that act like rubber bands? It's a rare, terminal disease called Larson's Syndrome.
A little boy from Emmet, Idaho, suffers from it. He's now at Primary Children's Medical Center. Carole Mikita tells Anthony Hardman's story." ********************************************
Larsen Syndrome, By: Bonnie Bieganski (Personal Homepage):"Although the first case of Larsen Syndrome was found to be in the year of 1929, it was in 1950 that Dr. Loren Larsen described a syndrome that was found to be present at birth, which he named after himself. He described it as being characterized by multiple dislocations of the major joints, deformities of the feet and hands, abnormal segmentation of the spine, and by an unusual facial appearance which include a flat nasal bridge, wide-spaced eyes, and a prominent forehead. Airway problems, caused by lack of rigidity of the upper airway, was an additional finding in Larsen Syndrome. Before Dr. Larsen named this syndrome, patients were misdiagnosed as having Arthrogryposis." ********************************************
Larsens syndrome and Shadee (Personal Homepage):"Shadee was born on Dec24th at 750am. He was not breathing and was being resusitated as I watched and cried. He finally began to breath but was wraped up and immediately sent to the nursery. I was told he had some deformities and the doctor would come and speak with me. My husband had explained that his knees were backwards and his feet were bent." ******************************************** ****************************************************** ******************************************************
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