41. The Chromosome 22 Interest Board sticklers syndrome lynne 3/21/2002, 805 pm parent seeking infoon partial trisomy 22 - a lurker 3/14/2002, 543 pm my daughter http://members.boardhost.com/Stephanie/

Trisomy 22 and Misc. 22 Interest Board Post a Message Chromosome 22 Central Welcome to the Trisomy 22 Interest Board Pierre Robin Syndrome Sarah 3/9/2003, 12:26 am Mosaic Trisomy 22 Jackie 3/4/2003, 9:19 pm Trisomy 11;22 Erin 3/3/2003, 5:08 pm 1 to 22 translocation Karen Lewis 2/27/2003, 3:41 pm Research into 22q11 and Duane syndrome Caroline Andrews 2/25/2003, 4:44 pm charge tim marks 2/12/2003, 11:35 pm Michelle 2/2/2003, 3:42 am pamela 12/20/2002, 9:27 pm Future children Rebecca Main 12/20/2002, 6:29 pm Re: Future children Llana 1/5/2003, 2:33 pm Re: Future children Joseph 12/21/2002, 1:58 am mosaic 46 XX 47, XX+22 pattern Toni McKinney 12/6/2002, 10:50 pm reserch project Rhiana Tessier 12/4/2002, 4:18 pm pseudotumor cerebri joannjacobson 11/29/2002, 7:41 am DGS Mary 11/25/2002, 9:16 pm Trisomy 22 Tonya Henry 11/19/2002, 4:48 pm Re: Trisomy 22 Jo-Ann Jacobson 11/29/2002, 7:50 am Re: Trisomy 22 Mary 11/26/2002, 2:06 pm Trisomy 22 Tonya Henry 11/19/2002, 4:48 pm 22q13 deletion Vicki 11/19/2002, 3:33 pm translocation betwwen 17 and 22 wendy 11/7/2002, 6:08 pm Re: translocation betwwen 17 and 22 Melissa 3/3/2003, 11:11 am

42. My Ancestors In The Civil War The inherited gene for blindness that is prevalent in the Majors family is called sticklers syndrome and is being extensively studied by Dr. Scotty Parma, a http://www2.netdoor.com/~bprest/csa.htm

My Ancestors in the Civil War (What I know so far; Samuel Washington Till (listed as S. W. Till) (Paternal 2nd Great Grandfather) 36 yrs. old w/5 children at the time of enlistment 13th Alabama Infantry Regiment 13th Alabama Volunteers Company A (another site) (Please press the back button to return to this page.) Source of Military Record: Elaine Hendricks If memory serves me correctly, Samuel W. was hospitalized in Virginia. Two of his brothers enlisting on May 5, 1862: 1. Allen D. Till, 1st Battalion Hilliard's Legion . Alabama Volunteers, Company D, Private, died July 20, 1862 2. James H. Till, 1st Battalion Hilliard's Legion . Alabama Volunteers, Company D, Private, died July 22, 1862 3. Daniel Green Till enlisted May 1862, 1st Battalion Hilliard's Legion . Alabama Volunteers, Company D, Private and 17th Alabama Infantry , Company B. He, like Samuel W., surivived the war. Benjamin Majors (Paternal 2nd Great Grandfather) 32 yrs. old w/5? children at the time of enlistment 17th Alabama Infantry Regiment 17th Alabama Infantry Regiment, Co. B

43. Garland Neal's PRS Story First of all, Garland Neal was evaluated by the geneticist again in June and diagnosedwith sticklers syndrome a connective tissue disorder which is present http://community.webtv.net/jollyo/GarlandNealsPRSStory

Garland Neal's PRS Story Parents, doctors, students, researchers.... Before linking this page and/or grabbing any photos, please check with me first at: jollyo@webtv.net This site was last updated on: January 4, 2003. Nov. 5, 1999 - Garland Neal - 5 minutes old Meet Garland Neal! Children's Medical Center of Dallas (thank God we are only a few minutes away). By the time we got to the hospital I had found a position that allowed him to breathe. The ER doctors realized that something was wrong, but had no idea what it could be. They called in an Ear,Nose and Throat specialist to evaluate Garland Neal. The ENT diagnosed him as having a rare condition called Pierre Robin , which is characterized by a small recessed chin, cleft palate and a tendency for the tongue to ball up in the back of the throat obstructing the airway. The sequence of anomalies is due to Garland Neal's tucked positioning in the womb. The next day a tracheostomy was performed on Garland Neal allowing him to breathe. He spent the next two weeks in Childrens Hospital. Lloyd and I basically had a crash course in nursing to learn how to care for a trach...it was all very overwhelming. Nov. 9, 1999 - Garland Neal - 4 days old - ICU

44. Causes There are a number of conditions that it can be associated with, one of the morecommon one’s being sticklers syndrome, which affects the eyes, hearing http://mick.murraystate.edu/cdi684/cdi684001/SMCCLAIN/Causes.htm

Causation The specific cause of Pierre Robin Syndrome is unknown. It is thought to be the result of poor development of the jaw about the 6 th to 11 th week of fetal life. This poor development affects a series of “normal” formation patterns in the face and neck and these changes lead to a “sequence” of events that result in structural deformity, varying in both degree and severity. It does not tend to run in families, unless a genetic condition is present. PRS is associated with many other genetic disorders, although it has been found independent of any genetic cause. It is important to see a geneticist early in the baby’s life. For reasons that are still unclear, the head of the fetus does not rise off the chest, causing the forward growth of the jaw to be restricted. Thus the tongue remains in the back of the mouth cavity and becomes forced up into the roof of the mouth (palate). This placement of the tongue prevents the palate from closing normally, and also explains why the mouth cavity is smaller than normal, airway structures are smaller than normal, and mouth muscles are at risk for being misplaced, malformed or uncoordinated. Symptoms v Combination of three features, possibly due to underdevelopment of the jaw

45. LINKS find relevant material. SIP Stickler Involved People, a site withinformation about sticklers syndrome. Stockport LEA Disruptive http://www.netspace.net.au/~area/links.html

46. Disability Access To Virtual Learning Environments evaluation activity using a range of disabled learners covering visual, mobility,dyslexia, colour blindness and other issues (sticklers syndrome and Williams http://www.techdis.ac.uk/resources/stiles01.html

Techdis Home Page Disability Access To Virtual Learning Environments Professor Mark J Stiles published 23/02/01 Summary COSE - a system developed by Staffordshire University with funding from JISC and published by Longman Software Publishing [2] Lotus LearningSpace [3] The study attempts to encapsulate the difficulties and needs of a broad cross section of the disabled student community. There are generic problems associated with each broad category but it should be noted at the outset that it is impossible to assess the VLE accessibility across the whole disability matrix. There are accessibility issues which are associated with multi-disabilities and therefore any study will have inherent gaps of reference. However, for those intending to develop or are already developing software for students with disabilities, or indeed for those intending to purchase or implement a VLE, the study provides some key indicators about a broad range of issues. Further and more detailed technical investigation is required to guide development teams towards a more appropriate solution for the disabled student community. Since the study, both COSE and Lotus LearningSpace have been enhanced considerably and further development is planned for COSE in line with Sun Java Accessibility [9] standards whilst also referencing (amongst others) the following guidelines: What is a Learning Environment?

47. THOUGHT PROVOKER Why would anyone in their right mind want to do something like that. Hey, Idon't like having sticklers syndrome (the cause of my blindness) ya know. http://www.whitsacre.info/vip/tp23.htm

THOUGHT PROVOKER 23 Guess Who's Coming To Visit? Last Updated 10-27-2002 To Provoke Thought Is The First Step To Beyond My new girl friend and I were making a surprise visit to her parents. “I thought you had just told me they didn't know we were together tonight.” I said. “Yes, but now, when they called and asked to borrow my old VCR, I said I'd bring it right over. And since you are here, I’ll have you carry it." "Thought you told me they needed time to get use to me and my vision?" I answered, trying to get a read on all that she was not saying. "Well, they were shocked. But like I told them years ago, I'm out on my own and they can't tell me how to live my life.” Later, in her parents driveway. “Beep! Beep!” “Oh darn! I’ve got my purse in my lap, I’m trying to twist around to get the VCR in the back Guess I’m nervous.” “I think so. Remember, I’m here to carry the heavy stuff, right?” I said, trying not to get nerved up myself. Using my girlfriend’s key, we walked in. In the living room, the TV was running one of those shopping shows, but no one was there. We looked around both floors. No one was in the house, the yard, Anywhere. "They couldn't have gone far, their car is in the garage." My girlfriend said. "Where could they be?”

48. 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: November 27, 2001

49. Butterfly Love's Dreambook Comments I have just found your site and read all about the sticklers syndromeboth myself and my 9 yr old daughter suffer from this i have already lost one http://books.dreambook.com/ldybutterfly/main.html

Butterfly Love Welcome to Dreambook , a nifty new free service from: New Dream Network Dreamhost , and Dreamservers If you have a minute, please sign my Dreambook too! Name: Debbie E-mail address: debbie_d12@hotmail.com Comments: Hi was looking at your site about the stiklers syndrome found it very interesting as i am also diagnosed with the syndrome. If you can could you mail me the symptoms you have. Monday, March 24th 2003 - 04:47:57 AM Name: Jem E-mail address: bubb_a_licious@msn.com Homepage URL: http://uk.msnusers.com/PspNutHouse Comments: Sunday, March 23rd 2003 - 09:17:52 PM Name: Sandy Homepage URL: http://www.dacotah.net Comments: Hey girlie girl.... The flash intro I made for ya looks great!! LMAO!!! Heh hee......I see you have it up and running! I need to do mine now!! :P Friday, March 21st 2003 - 11:46:13 AM Name: Danielle E-mail address: danielle@dgatorfan.com Homepage URL: http://www.dgatorfan.com Comments: (((hugs))) Saturday, February 22nd 2003 - 12:18:27 PM Name: Your Cousin Margie E-mail address: rmharris@comcast.net Comments: Hey there. Just checked out your site. Pretty interesting. You're very creative. I couldn't even begin to know how you would make all those blinkies and sig tags. Most of the blinkies made me laugh. You should make one that says 'Merreh Christmas' lol. Very pretty site.

50. Dave Hawley's Stickler Syndrome Page Coming Soon 2003 Conference Info! Click Here to Enter http://members.aol.com/dhawley/stickler.html

Dave Hawley's Stickler Syndrome Page This is a page devoted to indexing on-line information related to Stickler's Syndrome. It has not been thoroughly edited for two years, so it and the links in it are somewhat out-of-date. For the latest information, please see the SIP (US) website at http://www.sticklers.org/ or the Stickler Syndrome Support Group (UK) website at http://www.netcomuk.co.uk/~gfmsssg/ Stickler's Syndrome defines a set of closely-related genetic connective tissue disorders caused by a range of collagen gene mutations. It is an autosomal dominant trait, meaning that it is independent of sex and is expressed in a person with a single copy of the diseased gene. It thus has a 50% chance of being passed from parent to each child. Its expression can vary greatly within and among families, and is often recognized after a child is born with some degree of cleft palate or develops cataracts and/or retinal detachments at an early age. Its other expressions can include extreme myopia, hyperextensibile joints and arthritis, a somewhat flat face and small jaw and high frequency hearing loss. There are a wide range of collagen disorders with overlapping symptoms, so a genetic evaluation is required in order to diagnose Stickler's syndrome. Early and regular eye exams by an informed ophthamologist can make effective treatment of myopia, cataracts, and detached retinas possible. Craniofacial, skeletal, auditory, and cardiac evaluations may be considered. Contact sports should probably be avoided.

51. Www.sticklers.org Medical information, networking, news and updates.Category Health Support Groups Stickler s syndrome......Have you registered yet? Click here for the 2003 Conference Info!www.sticklers.org Click Here to Enter. www.cermak.com. http://www.sticklers.org/

Have you registered yet? Click here for the 2003 Conference Info! Click Here to Enter Have you registered yet? Click here for the 2003 Conference Info! Click Here to Enter

52. What We Know About Sticklers Stickler syndrome Synonyms arthroophthalmopathia hereditaria arthro-ophthalmopathy(AO, AOM) hereditary arthro-ophthalmopathy hereditary progressive arthro http://members.aol.com/coach001/page2.html

htmlAdWH('7005340', '120', '30'); htmlAdWH('7002028', '234', '60'); Main Create Edit Help WHAT WE DO KNOW ABOUT STICKLER SYNDROME Stickler Syndrome Synonyms arthro-ophthalmopathia hereditaria arthro-ophthalmopathy (AO, AOM) hereditary arthro-ophthalmopathy hereditary progressive arthro-ophthalmopathy Summary Progressive myopia beginning in late childhood, vitreoretinal degeneration, retinal detachment causing blindness, cataracts, hearing loss, cleft palate, and spondyloepiphyseal dysplasia. The craniofacial features range from essentially normal face to dish facies with micrognathia, depressed bridge of the nose, long philtrum, and prominent eyes. Patients with Stickler syndrome often have the feature of Robin syndrome (brachygnathia, cleft palate, glossoptosis, and backward and upward displacement of the larynx). Some cases have mental retardation. The clinical manifestations are variable and may differ from one patient to another. Stickler syndrome shares many characteristics with the Marshall, Wagner, and Walden syndromes and is sometimes designated as the Marshall-Stickler, Wagner-Stickler, or Walden syndrome. The radiographic characteristics of the

53. Causes There is a number of these conditions and one of the more common of these is sticklerssyndrome (for more information see Dave Hawley or sticklers Involved http://www.widesmiles.org/syndrome/prs/prscauses.html

PIERRE ROBIN SEQUENCE Causes How Pierre Robin Sequence occurs, or why, is still unclear, but thought to be the result of poor development of the jaw at about the 6th to the 11th week of foetal life. This poor development affects the series of "normal" formation patterns in the face and neck and these changes lead to a 'sequence' of events where the result is structural deformity of varying degree or severity. For reasons still yet unclear, the head of the foetus does not rise off the chest causing the forward growth of the jaw to be restricted . The tongue then remains back in the mouth cavity and becomes forced up into the roof of the mouth (palate). This prevents the palate from closing as it normally would. It also explains why the mouth cavity is smaller than normal, the tongue may be difficult to see, airway structures may be narrow and mouth muscles are at risk of being misplaced, malformed or uncoordinated. As yet there is no evidence that isolated Pierre Robin Sequence is related to anything specific - be it medication, x-rays or diet. Why the disorder occurs is still being investigated. It is very difficult to view on a scan (ultrasound) and there are no tests to diagnose this condition before birth. As far as medical science has been able to determine to date, there is nothing you could have done to prevent this from happening and nothing you did to cause it either. Pierre Robin Sequence can also appear as part of a genetic or chromosomal disorder . There is a number of these conditions and one of the more common of these is Sticklers Syndrome (for more information see

54. Stickler Syndrome Phone (316) 7752993 E-mail sip@sticklers.org Web site www.sticklers.org/sip/Canadian Chapter or other site Colorado Chapter Stickler syndrome Support Group http://www.kumc.edu/gec/support/stickler.html

Stickler syndrome Stickler Involved People (SIP) 15 Angelina Augusta, KS 67010 USA Phone: (316) 775-2993 E-mail: sip@sticklers.org Web site: www.sticklers.org/sip/ Canadian Chapter or other site Colorado Chapter Stickler Syndrome Support Group , United Kingdom Phone: (0011 44) 01932 229421 E-mail: wlhsssg@netcomuk.co.uk Other web resources Also See: National organizations information on genetic conditions or birth defects Information for Siblings and Family Members Stickler Syndrome Stickler Syndrome (Hereditary Arthroophthalmopathy) GeneReviews, GeneClinics Stickler Syndrome Page compiled by individual (Dave Hawley) DHawley@aol.com (home) or dave@lan.nsc.com (work) includes references and glossary Stickler Syndrome Type I and Type II Online Mendelian Inheritance in Man (OMIM) Boys and Girls Town National Research Hospital Center for Craniofacial Development and Disorders , Johns Hopkins University, Baltimore, MD Department of Cell Biology , Dr. Olsen, connective tissue research, Biological and Biomedical Sciences Harvard Medical School Long Term Follow-up of Ocular Findings in Children with Stickler's Syndrome , poster at American Association for Pediatric Ophthalmology and Strabismus , conference, 1995 Marshall Syndrome , Online Mendelian Inheritance in Man (OMIM) Search AltaVista for "Stickler Syndrome"

55. Health Library - Stickler Syndrome Stickler syndrome Support Group 27 Braycourt Avenue Waltonon-Thames Surrey, IntlKT12 Augusta, KS 67010 Tel (316)775-2993 Email sip@sticklers.org Internet http://health_info.nmh.org/Library/HealthGuide/IllnessConditions/topic.asp?hwid=

56. Colosip2000 National Institute of Health (search sticklers or tissue dissorders), NationalInstitute of Dental and Craniofacial Research (search for Stickler syndrome), http://hometown.aol.com/coach001/page1.html

htmlAdWH('7005340', '120', '30'); htmlAdWH('7002028', '234', '60'); Main Create Edit Help Welcome to Colorado SIP 2002 A local Colorado support group for those inflicted with Stickler Syndrome National Stickler Involved People Canada Chapter of SIP Contact Rick (National Assistant Coord.) Colorado SIP Coordinators Rick(L) and Randy(R) heading to the National SIP Conference. Contact Randy (Web Page creator) Looking for information About Stickler Syndrome? What We Do Know About Stickler Syndrome National Institute of Health (search Sticklers or tissue dissorders) National Institute of Dental and Craniofacial Research (search for Stickler Syndrome) Dave Hawley's Home Page (lots of links) Global Doctors Guide (good link to help locate Drs.) Colorado Sip Announces that it will host 2005 National Conference (read all about it) 2002 National Conference Report (coming soon) Just for Kids Siemens Hearing Aids (my favorite Hearing Aid, very leading edge company) last updated 10/10/02 page created with Easy Designer

57. Web Links www.sticklers.org The site of the US support group. Canadian chapter ofthe US support group. Stickler syndrome (Australia) Support Service. http://www.stickler.org.uk/weblinks.htm

WEB LINKS This is a list of some of the sites on the World Wide Web providing information on Stickler syndrome. Visitors should be aware that medical practices and medicines used in the UK may be different to those used in other parts of the world. Conversely, treatments that may be obtainable in other parts of the world, may not be available in the UK. www.sticklers.org The site of the US support group Canadian chapter of the US support group Stickler Syndrome (Australia) Support Service Royal National Institute for the Blind has a section on retinal detachments and an area for parents of children with impaired vision Wide Smiles is a US site with a lot of information on cleft lip and palate Dave Hawley's page An excellent compendium of information on Stickler Syndrome put together by Dave Hawley Dave Hawley has also provided a comprehensive list of web references to Stickler syndrome www.vrmny.com is a US site with information on the anatomy of the eye and details of retinal detachments www.eyeconditions.org.uk

58. NORD - National Organization For Rare Disorders, Inc. 15 Angelina Augusta KS 67010 Phone 316775-2993 800 N/A e-mail sip@sticklers.orgHome page http//www.sticklers.org; Stickler syndrome Support Group 27 http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Stickler Synd

59. Stickler Syndrome? Website http//www.sticklers.org Excellent resource! SIP is a network whose purposeis to educate and give support to people affected by Stickler syndrome. http://www.faces-cranio.org/Disord/Stickler.htm

The National Craniofacial Association P. O. Box 11082 * Chattanooga, TN 37401 Stickler Syndrome What is Stickler Syndrome? Stickler Syndrome may be the most common tissue disorder in the United States, possibly affecting 1 in 10,000 persons. People with Stickler Syndrome have the following characteristics: some degree of cleft palate cataracts and/or retinal detachment at an early age a flat face a small jaw skeletal abnormalities Why did this happen? Doctors are uncertain what causes Stickler Syndrome. They believe it is the result of a mutation of the genes during fetal development. Will this happen to children I have in the future? Stickler Syndrome tends to run in families. There is a 50% chance of passing it on to future children if you carry the trait. What kinds of problems could my child have? In addition to the physical characteristics common to Stickler Syndrome, your child may have the following problems: joint pain scoliosis hearing loss mitrovalve prolapse Will my child need surgery? Depending on the severity of the Stickler Syndrome, your child may need some or all of the following surgeries:

60. Stickler Syndrome; Treatment, Prevention, Cure sticklers is an under diagnosed disorder because a person can be affected in only Familiesare frequently not aware that they have Stickler syndrome until http://www.healthlinkusa.com/292a.asp

FREE. Would you like your site listed on HealthlinkUSA. Click here View health conditions and concerns alphabetically. A B C D ... Talk Health Monday March 31, 2003 Search information from 1,000's of today's best health sites Stickler Syndrome Links to websites which may include treatment, cures, diagnosis, prevention, support groups, email lists, messageboards, personal stories, risk factors, statistics, research and more. Featured Sites Become a Featured Site? The mission of Stickler Involved People is to educate and give support to people affected by Stickler Syndrome. They have a shared network and are in the process of starting a pen pal group for all ages... Stickler syndrome is a fairly common autosomal dominantly inherited disease characterized by a high incidence of... Related Searches Products and Services Stickler Syndrome Stickler Syndrome Search again. Find more information concerning: All Words Any Words Visit the HealthlinkUSA Talk Health Forum Click here to enter the forum Take part in discussions about Visit one of more than 40 featured health areas.

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