1. Untitled from a group called, "Sticklers Involved People" (SIP) concerning sticklers syndrome. Since it is a condition often 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.

2. Sticklers Syndrome CLINICAL AND MOLECULAR GENETIC ANALYSIS OF. STICKLER'S SYNDROME. Summary Stickler's Syndrome is a rare genetic defect with a of children with Stickler's syndrome reduces the risk of 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.

3. Sticklers Syndrome This question submitted by Robin Smith on 12/20/01. I am a 39 yr old female that has been tentatively diagnosed as having "Sticlers syndrome". I have been trying to find info on this disorder. http://med-aapos.bu.edu/publicinfo/store5/sticklerssyndrome6.50AM.html

sticklers syndrome This question submitted by Robin Smith on 12/20/01. I am a 39 yr old female that has been tentatively diagnosed as having "Sticlers syndrome". I have been trying to find info on this disorder. I know that it is a common disorder that is rarely diagnosed, and that it deals with the connective tissues. What I do not know is how this disorder manifests itself throughout the body. Since, connective tissues are throughout the body what organs are effected and how. Any info regarding this topic would be helpful and appreciated. It is my belief that understanding the disorder or illness involved it leads to better control and understanding of the limitations involved. Thank you. Next Article Previous Article Return to Topic Menu Here is a list of responses that have been posted to this article... Sticklers Syndrome Mother and Daughter (2/22/02) have you tried the march of dimes in the stat (1/3/02) STICKLER'S SYNDROME (12/20/01) If you would like to post a response to this article, fill out this form completely... Please limit the length of the title of the response to 18 characters.

4. Wagner Sticklers Syndrome Wagner sticklers syndrome. There are several factors at work but theunderly ing cause is he has Wagners sticklers syndrome. http://www.neec.com/messages/3039.html

Wagner Sticklers Syndrome Follow Ups Post Followup New England Eye Center discussion board Posted by Rose on August 06, 192002 at 19:17:56: In Reply to: Re: Posterior Detached Retina posted by Judy on February 02, 192002 at 01:11:08: : : My 14 yr. old nephew just had surgery for a posterior : : detached retina. The eye was lost. The explanana- : : tion is there was a gaping hole and there is nothing : : that would fill the hole without leaking out. His eyes : : are very large and at 14 we were told to expect at some : : point a high probability of him losing his other : : eye. There are several factors at work but the underly- : : ing cause is he has Wagners Sticklers Syndrome. Does : : anyone know anything about Wagners, its effect on the : : eyes, preventative measures that might be taken to save : : the other eye, or who we might contact to find this : : information. Thanks so much in advance for your re- : : sponses. I have been told that I and members of my family have Wagners Sticklers Disease. The only information I have is from very old pediatric journals (like 30 years ago) Does anyone have more updated information on this syndrome? Follow Ups: Re: Wagner Sticklers Syndrome Zach Argile Re: Wagner Sticklers Syndrome Stupid Kid Post a Followup Name: E-Mail: Subject: Comments: Optional Link URL: Link Title: Optional Image URL: Follow Ups Post Followup New England Eye Center discussion board

5. Re: STICKLERS SYNDROME&PIERRE ROBIN, Re sticklers syndrome PIERRE ROBIN, From maria sherman Category Pierre Robin Syndrome Date 11 May 2002 Remote Name 66.168.73.198 my daughter has a cleft palate, and piere roban syndrome now sticklers. 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: May 11, 2002

6. Re: Wagner Sticklers Syndrome Re Wagner sticklers syndrome. In Reply to Wagner sticklers syndromeposted by Rose on August 06, 192002 at 191756 My 14 yr. http://www.neec.com/messages/3325.html

Re: Wagner Sticklers Syndrome Follow Ups Post Followup New England Eye Center discussion board Posted by Stupid Kid on December 04, 192002 at 10:34:34: In Reply to: Wagner Sticklers Syndrome posted by Rose on August 06, 192002 at 19:17:56: : : : My 14 yr. old nephew just had surgery for a posterior : : : detached retina. The eye was lost. The explanana- : : : tion is there was a gaping hole and there is nothing : : : that would fill the hole without leaking out. His eyes : : : are very large and at 14 we were told to expect at some : : : point a high probability of him losing his other : : : eye. There are several factors at work but the underly- : : : ing cause is he has Wagners Sticklers Syndrome. Does : : : anyone know anything about Wagners, its effect on the : : : eyes, preventative measures that might be taken to save : : : the other eye, or who we might contact to find this : : : information. Thanks so much in advance for your re- : : : sponses. : I have been told that I and members of my family have Wagners Sticklers Disease. The only information I have is from very old pediatric journals (like 30 years ago) Does anyone have more updated information on this syndrome? Follow Ups: Post a Followup Name: E-Mail: Subject: Comments: Optional Link URL: Link Title: Optional Image URL: Follow Ups Post Followup New England Eye Center discussion board

7. Re: Sticklers Syndrome sticklers syndrome. This question submitted by ROBIN KINCAID on 7/24/97. 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: July 18, 2001

8. Sticklers Syndrome And Other Questions sticklers syndrome and other questions. My son is 14 months old. Within thefirst few days of his life he was diagnosed with sticklers syndrome. http://www.childrensglaucoma.com/wwwboard/messages/171.html

Sticklers syndrome and other questions Follow Ups Post Followup Children's Glaucoma WWWBoard FAQ Posted by Chery (209.45.201.85) on September 01, 2001 at 18:15:34: Hello everyone, I just found this message board today, I am so relieved to see that there is a message board out there specifically for glaucoma in children. Sincerely, Cheryl Vicory Follow Ups: Re: Sticklers syndrome and other questions Zach Argyle Re: Sticklers syndrome and other questions Shelly Post a Followup Name: E-Mail: Subject: Comments: Optional Link URL: Link Title: Optional Image URL: Follow Ups Post Followup Children's Glaucoma WWWBoard FAQ

9. Stickler Syndrome This page is to share a little about myself. I was diagnosed with Sticklers when I was very young. It causes alot of pain, emotionally, and physically. Several facial features are common with sticklers syndrome. Flat cheeks, flat nasal bridge, small upper jaw, pronounced http://home.flash.net/~lilbrat/sticklersyndrome.htm

10. Re: Sticklers Syndrome And Other Questions Re sticklers syndrome and other questions. In Reply to sticklers syndromeand other questions posted by Chery on September 01, 2001 at 181534 http://www.childrensglaucoma.com/wwwboard/messages/173.html

Re: Sticklers syndrome and other questions Follow Ups Post Followup Children's Glaucoma WWWBoard FAQ Posted by Shelly (4.54.193.14) on September 03, 2001 at 13:59:30: In Reply to: Sticklers syndrome and other questions posted by Chery on September 01, 2001 at 18:15:34: Cheryl, My 9 month old daughter has to use eye drops due to congenital cataracts and contact lens wear. I know that many eye drops do sting and are difficult to get in. I also must restrain her, but I was once given a suggestion that works well for us. It is often difficult to pry the childs eye open and then as soon as they squeeze the eye shut, the drop runs out. Lay the child down, and restrain him if necessary, put the drop in the inner corner of his eye. When he opens his eye and blinks, the drop will roll right in and that way you don't have to get him even more upset by forcing his eye open. You can even sit him up a little when the drop is in place and he should open his eye on his own because he is no longer being held down. Good luck! : Hello everyone

11. 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 Ab out Us What's New here ... Stickler Syndrome Stories to Share Our Kids' Stories Adult Stories Tips from our Parents Safety Tips Trach Tips Cleft Repair - coming soon Jaw Distraction - coming soon G-tube - coming soon 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.

12. Aliyah's Story We knew Monique had sticklers syndrome at just about the time the webegan dating in 1980. She had always had eye troubles, including http://www.pierrerobin.org/Stories/aliyahstory.html

Home Ab out Us What's New here ... Stickler Syndrome Stories to Share Our Kids' Stories Adult Stories Tips from our Parents Safety Tips Trach Tips Cleft Repair - coming soon Jaw Distraction - coming soon G-tube - coming soon Aliyah (submitted by parents Gary and Monique) My wife and I have been married for 19 years as of August 10, and this year we spent it in the hospital after the birth of our new daughter, Aliyah. We knew Monique had Sticklers syndrome at just about the time the we began dating in 1980. She had always had eye troubles, including high myopia, but when her retinas began to detach in her teens, her doctors began to suspect something else was wrong, but never told her parents until she was seen by a geneticist in Boston after her second scleral buckle at BU hospital. They told us that she had Wagners-Sticklers syndrome, that it was autosomal dominant, and that we should probably not have kids, since the syndrome could express itself greater in the next generation. But love prevailed, and we got married, and waited 7 years before we "spun the wheel" to have a child. Ariel was born in 1987 with no signs of Sticklers. We decided to try again, but Monique had 5 miscarriages over 8 years. Her mother had also had multiple miscarriages, a condition we were told may have been the result of her mother's incarceration in the Nazi concentration camp. In 1996, our second daughter Davida was born. We had done ultrasounds throughout the pregnancy, which showed no sign of Sticklers anomalies (cleft palate, etc.) When she was born, we noticed that her chin seemed set back a bit, but the doctors didn't think anything about it. She was discharged in 18 hours, with extremely high hematocrit (89) and rising bilirubin (20), due to insurance regulations. The next two weeks were hell. Frequent visits to the ER's around us, as she turned orange, lethargic and wouldn't eat. Her weight continued to drop, our frustration continue to rise. My wife had breastfed our first daughter, and was determined to breastfeed Davida. We called in a Lactation consultant, who gave Monique silicone nipple shields that allowed the baby to latch on and pull the nipple into her mouth.

13. 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

14. Sticklers Syndrome sticklers syndrome. This question submitted by ROBIN KINCAID on 7/24/97.I am looking for an physician in So. California who has http://med-aapos.bu.edu/publicinfo/store2/sticklerssyndrome12.34PM.html

sticklers syndrome This question submitted by ROBIN KINCAID on 7/24/97. I am looking for an physician in So. California who has some experience treating children that have Stickler's Syndrome. Please respond back crobinpe@.net. Thank you Next Article Previous Article Return to Topic Menu Here is a list of responses that have been posted to this article... hrm... (2/20/01) Stickler Syndrome (7/24/97) Stickler's (7/24/97) If you would like to post a response to this article, fill out this form completely... Please limit the length of the title of the response to 18 characters. Response Title: Author: Response Text: Original Article: (Don't change this field!) Article complete. Click HERE to return to the Public Information Menu.

15. Public Information - AAPOS Service in iris (7/24/97); sticklers syndrome (7/24/97); Occluded Contact(7/23/97); need iformation (7/23/97); Surgery (7/23/97); Opt Nrv http://med-aapos.bu.edu/PublicInfo/PublicInfo97aug.html

1997 Public Information - A Service of AAPOS From 1-1-97 thru 8-18-97 Feel free to browse the articles You may also review articles entered... since I last checked in the last hour in the last 8 hours in the last day ... in the last 3 days These are the Public Information Documents currently on-line fom 1/1/97 thru 8/18/97 No switching (8/19/97) coloboma cyst (8/18/97) hyperopia-schisis (8/18/97) Post Esotropia sur (8/18/97) ... Optic nerve (1/1/97) This is provided to the non-medical public as a service of the Amercian Association for Pediatric Ophthalmology and Strabismus. For more detailed information, please consult with your local pediatric ophthalmologist. IMPORTANT: If this page seems to be missing recently added documents, click the "Reload Page" button on your Web Browser to update the menu. You can send E-Mail to the AAPOS Web Server directly from here. Please send comments and suggestions. You may also attach electronic files to e-mail. Please send us feedback Last Modified by Rick Blocker on 8/19/97 Press This To Return to Open Forum Main Menu

16. Essential Baby Forum - Pierre Robin Syndrome / Sticklers Syndromw I know this problem well my son who is now six was born with pierre robin andsticklers syndrome it was really hard at first but in time his problems got http://www.essentialbaby.com.au/CFForum/printthread.cfm?Forum=68&Topic=6621

17. Www.cermak.com sticklers syndrome Read about a frightening genetic disorder calledStickler Syndrome, and connect to those who suffer from it. http://www.cermak.com/text.html

Organizations Accredited Services Offering inspectors in three states, Accredited Services is the answer for your electrical inspection needs. Click here to visit their site. RadioTower Networks RadioTower Networks is a division of Cermak Technologies, offering web hosting, email services, and domain registration. Click here to find out more. Cermak Technologies Consult us for local troubleshooting and repair, custom systems and networks, and more! Find out how we can help you by clicking here. Tech Support Guy Answering almost any question about your computer, including Windows 98, Tech Support Guy is donating free technical support. Click here to find the answer to your question. Sticklers Syndrome Read about a frightening genetic disorder called Stickler Syndrome, and connect to those who suffer from it. Take a moment and click here to visit the Stickler Involved People. Cermak Family G-Funk's World The personal homepage of Glenn Cermak. Click here to visit him. MikeAndHeather.Net Michael Cermak and Heather Warner's web page and photo album. Click here to visit them.

18. Fact Sheet Retinal Diseases deafness. sticklers syndrome autosomal dominant disorder, leadingto cataracts, retinal detachment and glaucoma. These children http://www.blindbabies.org/factsheet_rd.htm

Pediatric Visual Diagnosis Fact Sheet TM RETINAL DISEASES DEFINITION The retina is the innermost coating of the eye, containing light-sensitive nerve cells and fibers connecting with the brain through the optic nerve. The retina is held in place by the pressure of a gel (vitreous) within the eye. Note: Retinopathy of Prematurity and Albinism, two more common retinal diseases, are addressed in individual fact sheets. In order to understand how some retinal diseases are inherited, it is important to be aware of the following: Patterns of Inheritance Autosomal dominant: inherited from one affected* parent, with a 50% chance of each pregnancy being affected. Autosomal recessive: inherited from both non-affected parents, with a 25% chance of each pregnancy being affected. X-linked recessive: inherited from a non-affected mother, with a 50% chance of each pregnancy being affected. Usually only sons are affected. *affected: when applied to a genetic disease, means the individual has the clinical disorder.

19. Princess Butterfly's World double jointed. These will tend to worsen with age. Several facialfeatures are common with sticklers syndrome. Flat cheeks, flat http://butterflylove.netfirms.com/sticklersyndrome.htm

This site is hosted by Netfirms Web Hosting Stickler Syndrome This page is to share a little about myself. I was diagnosed with Sticklers when I was very young. It causes alot of pain, emotionally, and physically. Most people do not understand it, so therefore I excuse the ignorance of some of those that teased me and harrassed me every day in school from kindergarten on up. To this day I am still teased by people because I am a little different. Those people will never know how their teasing has made *me* a stronger person. Please read this information, and if you see someone different then you, dont make fun of them, it could happen to you, or your future child. ~Shauna~ 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.

20. Retinal Diseases - Blind Preschool sticklers syndrome autosomal dominant disorder, leading to cataracts,retinal detachment and glaucoma. These children have high http://www.blindpreschool.ca/fact06.html

RETINAL DISEASES DEFINITION The retina is the innermost coating of the eye, containing light-sensitive nerve cells and fibers connecting with the brain through the optic nerve. The retina is held in place by the pressure of a gel (vitreous) within the eye. Note : Retinopathy of Prematurity and Albinism, two more common retinal diseases, are addressed in individual fact sheets. In order to understand how some retinal diseases are inherited it is important to be aware of the following: Patterns of Inheritance Autosomal dominant: inherited from one affected* parent, with a 50% chance of each pregnancy being affected. Autosomal recessive: inherited from both non-affected parents, with a 25% chance of each pregnancy being affected. X-linked recessive: inherited from a non-affected mother, with a 50% chance of each pregnancy being affected. Usually only sons are affected. *affected: when applied to a genetic disease, means the individual has the clinical disorder.

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