1. The Importance Of Genetics Scoliosis, a curvature of the spine, is less common with sticklers syndromethan vision or hearing problems, but is still a concern. http://www.pierrerobin.org/genetics.html

Home New parents About Us Support ... Message Board A place to call home, where you are never alone The Importance of Genetics When a child is born with Pierre Robin Sequence, a thorough genetic evaluation should be performed during their first year of life. Stickler Syndrome is the most likely genetic syndrome associated with PRS, a vision and hearing test should be ordered soon after birth. Another very common condition associated with PRS is Velocardiofacial syndrome. There are many other conditions associated with PRS, the best plan is a thorough genetic work up to get baselines and rule out other conditions. Please see our section on Associated Conditions and Syndromes for a comprehensive list of other conditions and links to information. Due to the possibility of Stickler Syndrome , periodic vision and hearing checks should be continued always, with vision checks at least once a year. Make sure the eyes are dilated so the doctor can get a good look at the retina. Scoliosis, a curvature of the spine, is less common with Sticklers Syndrome than vision or hearing problems, but is still a concern. With each well child appointment, have his or her pediatrician check for scoliosis. Be particularly vigilant as your son or daughter enters adolescence, as this is the most likely time for a curve to develop. When you have a genetic evaluation appointment, it is good to be prepared in advance. Spend some time making a list of any physical abnormalities in the Father or Mother's extended family. The Doctor will want to examine your child thoroughly and possibly look at the palate of both parents. Baby pictures of Mom, Dad and baby are helpful since Sticklers Syndrome, in particular, has a characteristic appearance in early childhood.

2. Untitled from a group called, "Sticklers Involved People" (SIP) concerning sticklers syndrome. Since it is a to find out more about sticklers syndrome, contact Bill or Pat Houchin http://www.widesmiles.org/cleftlinks/WS-152.html

You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org This one is about: Stickler's Overview (c) 1996 Wide Smiles This Document is from WideSmiles Website - www.widesmiles.org Reprint in whole or in part, with out written permission from Wide Smiles is prohibited. Email: widesmiles@aol.com Sticklers Overview: I was given some information from a group called, "Sticklers Involved People" (SIP) concerning Sticklers Syndrome. Since it is a condition often associated with Pierre Robin (but not ALWAYS associated with PR) I thought it would be good to share it here. If your child has Pierre Robin, don't let this scare you. But if your child has Pierre Robin and any of this rings true, go to your doctor and ask them to screen for Sticklers. (In fact, every PR-affected child should be screened for Sticklers.) From the brochure, "Stickler Syndrome: What you Need to Know First!" "Stickler Syndrome is a genetic disorder which affects connective tissues, including the joints, eyes, palate, heart and hearing. This disorder is characterized by possible vision problems, hearing loss, early arthritis, cleft palate, and heart murmurs. "Because Stickler Syndrome is different in each person, it is very difficult to diagnose. All parts of the body do not have to be affected for the diagnosis of Stickler Syndrome to be given.

3. Re: STICKLERS SYNDROME&PIERRE ROBIN, Re sticklers syndrome PIERRE ROBIN, From maria sherman. Category Pierre Robin Syndrome. Date 11 May 2002. Time 085702. Remote Name 66.168.73.198. Comments. my daughter has a cleft palate, and http://www.cleft.org/_discussion/00000e48.htm

HOME CONTENTS SEARCH POST ... UP From: maria sherman Category: Pierre Robin Syndrome Date: 11 May 2002 Time: Remote Name: Comments my daughter has a cleft palate, and piere roban syndrome now sticklers. she is hyper nasal also even though her palate is fixed she is gonna have more surgery to fix the problem so she wont be hyper nasal. Last changed: January 16, 2004

4. Re: Sticklers Syndrome Re sticklers syndrome. From nancy@pierrerobin.org. Category Craniofacial General. Date 29 Mar 2000. Time 142628. Remote Name 171.213.115.16. Comments. Hi Jamie Your science teacher isn't correct. Any one with Sticklers has a 50% chance of passing it on their children http://www.cleft.org/_discussion/000006c7.htm

HOME CONTENTS SEARCH POST ... UP Re: sticklers syndrome From: nancy@pierrerobin.org Category: Craniofacial General Date: 29 Mar 2000 Time: Remote Name: Comments Hi Jamie: Your science teacher isn't correct. Any one with Sticklers has a 50% chance of passing it on their children. In one case study I have read about, 72% of those with Sticklers have it due to genetics and 28% represent new mutations. The thing about SS is that some people have it and don't know it. Some people don't have a lot of symptoms and are mildly affected. Others, like my 11 year old son, have serious eye involvement and some joint issues. David has Pierre Robin Sequence and Sticklers. He has had three retinal detachments and we are waiting for a lens implant now. I am a member of Stickler Involved People, you need to check out their website and get some good information to give to your teacher. http://www.sticklers.org Good luck to you and your family, let me know if I can help anymore. Last changed: January 16, 2004

5. Stickler Involved People Other doctors continued the study and have redefined Stickler syndrome to how weknow it today. Several facial features are common with sticklers syndrome. http://www.sticklers.org/sip/def.html

MEDICAL INFO definition and info ways to cope NETWORKING ... CONTACT US Stickler Syndrome (a summary by Bill Houchin) Stickler syndrome is a connective tissue disorder, a genetic malfunction in the tissue that connects bones, heart, eyes, and ears. This disorder is associated with problems of vision, hearing, bone and joint , facial and cleft palate, and heart. Stickler syndrome received its name from Dr. G. B. Stickler, who first studied and documented the syndrome. The term "syndrome" is derived from the Greek work "syn" meaning "together with" and the Greek word "drome" meaning "to run". A syndrome is a collection of specific symptoms, all with one cause. Dr. Stickler first studied this syndrome at Mayo Clinic in 1965. His paper titled "Hereditary Progressive Arthro-Ophthalmopathy" associated the severe sight deterioration with joint changes. Other doctors continued the study and have redefined Stickler syndrome to how we know it today. There are several sight problems that may occur to Stickler patients. Common problems include near sightedness, astigmatism, and cataracts, which can be treated with glasses or surgery. More serious problems include the gel which fills the eye deteriorating, the retina deteriorating, eyes moving independent of each other, and glaucoma. Any of these serious problems can lead to blindness. The hearing loss suffered by those who are affected will affect either the middle or inner ear. Deafness can result in the extreme cases.

6. Stickler - Marshall Syndrome facial features are common with sticklers syndrome. Flat cheeks, flat be diagnosed Stickler Syndrome / Marshall Syndrome. by Boystown. Stickler Syndrome and Marshall Syndrome http://www.ibis-birthdefects.org/start/sticksyn.htm

Tips for printing Stickler - Marshall Syndrome About I.B.I.S. Home Search Topics Search all contents ... "In the News" Messages... Questions/comments Report Dead Links S.O.S. - Exchange Join I.B.I.S. ... Etchings Please Explore: 11 / 22 Translocation Cleft Lip Pierre Robin S. Cleft Palate ... Key Information Sources Topics include Titles and Stickler S. Type I - II - III Special Resources Stickler Syndrome A Selection of Internet Sites [*] Outstanding [P] For Professionals [S] Support Group [Ukrainian] Stickler Syndrome by Nathaniel H Robin, MD et al. from GENE Clinics, last update: 8 June 2000. Arthro - Ophthalmopathy, Arthroophthalmopathy, Hereditary Progressive Arthroophthalmopathy Stickler syndrome is a connective tissue disorder which can include ocular findings of myopia, cataract, and retinal detachment; hearing loss which is both conductive and sensorineural; midfacial underdevelopment and cleft palate (either alone or as part of the Robin sequence); and mild spondyloepiphyseal dysplasia and/or precocious arthritis. Variable phenotypic expression of Stickler syndrome occurs both within families and between families. Interfamilial variability is in part explained by locus and allelic heterogeneity. The diagnosis of Stickler syndrome is clinically based. At present, no consensus minimal clinical diagnostic criteria exist. Mutations affecting one of three different genes (

7. Stickler Involved People a summary by Bill Houchin) Stickler syndrome is a connective tissue disorder, a genetic Several facial features are common with sticklers syndrome. Flat cheeks, flat nasal http://www.stickler.org/sip/def.html

MEDICAL INFO definition and info ways to cope NETWORKING ... CONTACT US Stickler Syndrome (a summary by Bill Houchin) Stickler syndrome is a connective tissue disorder, a genetic malfunction in the tissue that connects bones, heart, eyes, and ears. This disorder is associated with problems of vision, hearing, bone and joint , facial and cleft palate, and heart. Stickler syndrome received its name from Dr. G. B. Stickler, who first studied and documented the syndrome. The term "syndrome" is derived from the Greek work "syn" meaning "together with" and the Greek word "drome" meaning "to run". A syndrome is a collection of specific symptoms, all with one cause. Dr. Stickler first studied this syndrome at Mayo Clinic in 1965. His paper titled "Hereditary Progressive Arthro-Ophthalmopathy" associated the severe sight deterioration with joint changes. Other doctors continued the study and have redefined Stickler syndrome to how we know it today. There are several sight problems that may occur to Stickler patients. Common problems include near sightedness, astigmatism, and cataracts, which can be treated with glasses or surgery. More serious problems include the gel which fills the eye deteriorating, the retina deteriorating, eyes moving independent of each other, and glaucoma. Any of these serious problems can lead to blindness. The hearing loss suffered by those who are affected will affect either the middle or inner ear. Deafness can result in the extreme cases.

8. Syndromes Which Often Result In Combined Vision And Hearing Loss Usher Syndrome is one disorder that comes to mind readily for professionals in both the proper medical treatment. sticklers syndrome often has hip dislocations associated with it http://www.tsbvi.edu/Outreach/seehear/archive/syndromes.html

Return to Archive Syndromes Which Often Result in Combined Vision and Hearing Loss by Kate Moss, Family Training Specialist, TSBVI Outreach Usher Syndrome is one disorder that comes to mind readily for professionals in both the field of vision and hearing when they think of syndromes which result in dual sensory impairment or deaf-blindness. However, there are many syndromes that have both vision and hearing impairment as part of the conditions that define the syndrome. It is important to be aware of these conditions, since one of the sensory disabilities is often times more evident than the other. This situation makes it easy to overlook the impact of the combined vision and hearing loss. Below some of the more common syndromes, which can manifest with both vision and hearing loss, are described. If you are interested in obtaining more detailed information about any of these conditions, you may contact: National Organization for Rare Disorders P.O. Box 8923 New Fairfield, CT 06812-1783 Most of the information about these syndromes comes from reports provided by NORD. The exception is the information on Congenital Rubella Syndrome which comes from a booklet, "Congenital Rubella Syndrome: Health Care Challenges" written by Dr. Steven Parker from Boston University School of Medicine in collaboration with Perkins School for the Blind, Helen Keller National Center and St. Luke's-Roosevelt Hospital. This publication is available through Perkins School for the Blind.

9. HealthlinkUSA Forum - Sticklers Syndrome sticklers syndrome Message 1 of 1. what is the life expectancy of a person withsticklers syndrome ? is their any kind of prevention for sticklers syndrome. http://www.healthlinkusa.com/forum.fwx?number=1&thread=133319

10. Stickler's Syndrome Facial Differences Conditions And Diseases Support Groups He Support Groups. Most comprehensive resource on Support Groups Conditions And DiseasesFacial Differences sticklers syndrome. Stickler Syndrome Support Group . http://support-groups.health.designerz.com/support-groups-conditions-and-disease

Map.Designerz.com Health.Designerz.com Support Groups News Support Groups Chat ... Mailing List document.write(' '); Health Support Groups Conditions and Diseases Facial Differences Stickler's Syndrome ... Support Groups Chat Channels Visited Clear Featured Links Web Hosting Domain Names Designerz Portals Store Sign up for our mailing list ... Support Groups A comprehensive resource on Support Groups Conditions And Diseases Facial Differences Sticklers Syndrome Show Health support groups (Support Groups Conditions And Diseases Facial Differences Sticklers Syndrome) content on your web site Reach Health support groups (Support Groups Conditions And Diseases Facial Differences Sticklers Syndrome) Audience Save on Support Groups Conditions And Diseases Facial Differences Sticklers Syndrome books, magazines and software See which Support Groups Conditions And Diseases Facial Differences Sticklers Syndrome domain names are available Search Support Groups Conditions And Diseases Facial Differences Sticklers Syndrome on other search engines Press Releases, Stories and Articles on Support Groups Conditions And Diseases Facial Differences Sticklers Syndrome View all press releases Submit your press release View all articles Submit your article Featured Results (opens in a new window) Stickler Involved People Medical information, networking, news and updates.

11. Entrez PubMed Families with sticklers syndrome type 1 have a characteristic congenital vitreousanomaly and are linked without recombination to markers at the COL2A1 locus. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8

12. Stickler's Syndrome Browse entry words starting with A, B, C, D, E, F, G, H, I, J, K, L, M,N, O, P, Q, R, S, T, U, V, W, X, Y, Z, Other characters, Stickler s syndrome,.Print this article, http://www.amershamhealth.com/medcyclopaedia/medical/Volume VII/STICKLERS SYNDRO

Amershamhealth.com Search for: Type a word or a phrase. All forms of the word are searchable. Browse entry words starting with: A B C D ... Other characters Stickler's syndrome, (Gunnar Stickler, born 1925, German born, American paediatrician), see hereditary arthro ophthalmopathy HC The Encyclopaedia of Medical Imaging Volume VII Contacts GE Healthcare Making Waves

13. Sticklers Syndrome sticklers syndrome. This question submitted by Robin Smith on 12/20/01.I am a 39 yr old female that has been tentatively diagnosed http://med-aapos.bu.edu/publicinfo/store5/sticklerssyndrome6.50AM.html

14. Stickler's Syndrome sticklers syndrome picture sticklers syndrome. Links Health Support GroupsConditions and Diseases Facial Differences Stickler s Syndrome. http://www.zookle.com/Health/Support_Groups/Conditions_and_Diseases/Facial_Diffe

zOO KLE link exchange top 100 Add Your Site Jokes ... picture sticklers syndrome Links: Health: Support Groups: Conditions and Diseases: Facial Differences: Stickler's Syndrome Home Health Support Groups Conditions and Diseases ... Facial Differences : Stickler's Syndrome Stickler's Syndrome Web Search Results Below Add Your Site or modify Dave Hawley's Stickler Syndrome Page Indexes on-line information related to Stickler's Syndrome. http://hometown.aol.com/dhawley/stickler.html Stickler Involved People Medical information, networking, news and updates. http://www.sticklers.org/ Stickler Syndrome Outreach - Oregon Reaching out to those in Oregon who are affected by Stickler's Syndrome. http://oregonsticklers.homestead.com Stickler Syndrome Support Group Information and support for people affected by Stickler Syndrome. UK-based, but with international links. http://www.stickler.org.uk Top News Stories - Wed, 28.1.04 18:00 PM Record $755,000 fine Dems moving on to next primaries Van explodes near Baghdad hotelas UN team arrives in Iraq Judge Clears Blair of Wrongdoing in Scientist's Suicide ... Clip Art Free Zookle.com privacy contact Search ©Zookle.com 2004

15. STICKLERS SYNDROME sticklers syndrome. From VICTORIA,BC Category Craniofacial General Date27 Nov 2001 Time 173857 Remote Name 209.53.81.107. Comments. http://www.cleft.org/_discussion/00000d52.htm

HOME CONTENTS SEARCH POST ... PREVIOUS UP STICKLERS SYNDROME From: VICTORIA,B.C. Category: Craniofacial General Date: 27 Nov 2001 Time: Remote Name: Comments Last changed: January 16, 2004

16. Sticklers Syndrome And Pierre Robin sticklers syndrome and Pierre Robin. From Dana Category Craniofacial GeneralDate 11 Feb 2004 Time 115520 Remote Name 209.152.122.253. Comments. http://www.cleft.org/_discussion/000012fd.htm

HOME CONTENTS SEARCH POST ... PREVIOUS UP Sticklers Syndrome and Pierre Robin From: Dana Category: Craniofacial General Date: 11 Feb 2004 Time: Remote Name: Comments My 6-month old son was born with a Pierre Robin, and it was tough at first. He had a very hard time feeding, and ended up in the hospital at 6 weeks due to failure to thrive. Now at 6 mos he is doing very well, fedding much better and is right on track developmentally. The only real problem we have is when he eats solid food he often sneezes it out his nose. Poor guy! He also just had tubes put in his ears last week due to fluid in his ears. We think he has SS, because my husband was diagnosed with likely SS just a couple years ago. They never knew what it was when he was a kid, but he was born with a submucous cleft palate, and has had a retinal detachment and poor vision, and has loose joints. No other symptoms so far. He felt very guilty when Owen was born, because he passed it on to him. I noticed in reading the families info that many had cleft palates repaired very earlyhere they won't do it til Owen is 9-18 months oldwe will likely find out next month when they will schedule it. Just curious what everyone's experience has been. Not sure why some are done so early and others have to wait. ~Dana Last changed: February 11, 2004

17. Sticksyn.html sticklers syndrome. A hereditary condition affecting the vitreous andretina. The person may also have myopia, cataract and glaucoma http://www.stjosephsvi.ie/sticksyn.html

STICKLERS SYNDROME A hereditary condition affecting the vitreous and retina. The person may also have myopia, cataract and glaucoma as secondary eye conditions. It can be associated with a mid-facial flattening, cleft palate. small jaw and lowered position of the tongue. RETURN TO 'EYE CONDITIONS' RETURN TO HOMEPAGE

18. Sticklers Syndrome CLINICAL AND MOLECULAR GENETIC ANALYSIS OF STICKLER S SYNDROME. SummaryStickler s Syndrome is a rare genetic defect with a fault http://www.irisfund.org.uk/sticklers.htm

CLINICAL AND MOLECULAR GENETIC ANALYSIS OF STICKLER'S SYNDROME Summary: Stickler's Syndrome is a rare genetic defect with a fault in connective tissue, which produces holes in the retina leading to blindness. Patients are further affected with cleft palate, deafness and arthritis. Understanding the genetic basis may lead to gene therapy, increased detection and better genetic counselling. Stickler's syndrome (Hereditary Arthro-opththalmopathy) is a dominantly inherited disorder of collagen, and is the commonest inherited cause of retinal detachment in childhood. Patients also have cleft palate, deafness and arthritis. Early treatment of children with Stickler's syndrome reduces the risk of blindness but delay in making the diagnosis is still a common problem. In a minority of patients, Stickler's syndrome arises as a result of a new mutation and without a suggestive family history, the disorder is frequently undiagnosed until blindness occurs. As a result of research supported by The Iris Fund for Prevention of Blindness, it has recently become evident that Stickler's syndrome forms a spectrum of distinct but interrelated connective disorders with involvement of different genes.

19. The Chromosome 22 Interest Board: Sticklers Syndrome 22 Interest Board Post a Response Trisomy 22 and Misc. 22 Interest Board. sticklers syndrome Posted by lynne on 3/21/2002, 805 pm 12.227.194.168. http://members.boardhost.com/Stephanie/msg/744.html

Trisomy 22 and Misc. 22 Interest Board Post a Response Trisomy 22 and Misc. 22 Interest Board sticklers syndrome Posted by lynne on 3/21/2002, 8:05 pm Does anybody have any info on this genetic mutation which apparently is degenerative in nature? Please forward to above e-mail. Thanks! Responses: There are no responses to this message. Post a Response Your Name: Your Email: Subject: Message: Previous Message : Does anybody have any info on this : genetic mutation which apparently is : degenerative in nature? Please : forward to above e-mail. : Thanks! : Notify me by email of all message replies. By posting you confirm that you have read and agreed to be bound by Boardhost's usage terms Visit our home page, http://www.nt.net/~a815/chr22.htm Hosted for free by Boardhost Create your own message board!

20. Trisomy 22 And Misc. 22 Interest Board: Re: Sticklers Syndrome 22 Interest Board . Re sticklers syndrome Posted by Theresa on 9/15/2003,117 pm, in reply to sticklers syndrome 65.137.87.208. http://members.boardhost.com/Stephanie/msg/1078.html

Trisomy 22 and Misc. 22 Interest Board Post a Response Trisomy 22 and Misc. 22 Interest Board Re: sticklers syndrome Posted by Theresa on 9/15/2003, 1:17 pm , in reply to " sticklers syndrome I thought my daughter had Pierre Robin Syndrome, but with the newest DNA testing she has been diagnosed Sticklers. Shands Hospital is going to be sending me the results from the blood test, and info. on the syndrome as well as support group info. When I find out, I will post the info., as much as is made available to me. Previous Message : Does anybody have any info on this : genetic mutation which apparently is : degenerative in nature? Please : forward to above e-mail. : Thanks! Responses: There are no responses to this message. Post a Response Your Name: Your Email: Subject: Message: Previous Message : I thought my daughter had Pierre Robin : Syndrome, but with the newest DNA : testing she has been diagnosed : Sticklers. Shands Hospital is going to : be sending me the results from the : blood test, and info. on the syndrome : as well as support group info. When I : find out, I will post the info., as : much as is made available to me. : Previous Message : Does anybody have any info on this : genetic mutation which apparently is : degenerative in nature? Please : forward to above e-mail. : Thanks! : : : Notify me by email of all message replies.

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