81. Entrez PubMed During recent years a new syndrome involving degenerations of the corpus vitreum and retina, and dys http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=7

82. Stickler Syndrome Synonyms, Eastern Carolina Stickler syndrome Synonyms University Health Systems of Eastern Carolina serves tarboro, ahoskie, edento, winsor, maxhead, dear county, outebanks counties http://www.uhseast.com/114294.cfm

Health News Health Library Health Topics Healthy Living ... Nutrition Information on diseases and health concerns, including symptoms, treatment options, and prevention. Stickler Syndrome Synonyms Disorder Subdivisions General Discussion Resources ... For a Complete Report Important It is possible that the main title of the report Stickler Syndrome is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report. Synonyms Arthro-Ophthalmopathy Epiphyseal Changes and High Myopia Ophthalmoarthropathy Weissenbacher-Zweymuller Syndrome Disorder Subdivisions None General Discussion Most authorities agree that there are four types of Stickler syndrome, of which three are reasonably well differentiated and a fourth remains not well understood. Stickler syndrome Type I; (STL1): This form is responsible for about 75% of reported cases and presents with a full array of symptoms (eye, ear, jaw and cleft, joints). Stickler syndrome Type II; (STL2): Patients with this form also present with a full array of symptoms. Resources Stickler Syndrome Support Group PO Box 371 Walton-on-the-Thames Surrey, Intl KT12 2YS

83. Healthfinder® — Stickler Involved People - SIP educators, and people with Stickler syndrome and their families. Because Stickler syndrome manifests itself differently in each person, http://www.healthfinder.gov/orgs/HR2507.htm

Help Advanced Search News Library ... Organizations Stickler Involved People - SIP Organization URL(s) sip@sticklers.org www.sticklers.org Other Contact Information 15 Angelina Augusta, KS 67010 316-775-2993 (Voice, ) Description Stickler Involved People (SIP) is a national network whose purpose is to increase awareness of Stickler syndrome by educating medical professionals, educators, and people with Stickler syndrome and their families. Because Stickler syndrome manifests itself differently in each person, it is very difficult to diagnose. The Network's education material includes information on the variety, and severity of symptoms associated with Stickler Syndrome, and a diagnostic aid for physicians, specifically neonatologists and pediatric geneticists and rheumotologists. SIP responds to inquiries by mail, telephone, and electronic mail. SIP provides an annual conference to help educate and has a list server to promote one-on-one contacts. Contact SIP for additional information. Print Resources Quarterly Newsletter (free with membership), journal reprints, and the book "Stickler - the Elusive Syndrome". A publication list is available.

84. Optometry And Vision Science - UserLogin The characteristics of the child with Stickler s syndrome were a cleft palate, mild hearing deficit, and a highly abnormal and largely absent vitreous gel. http://www.optvissci.com/pt/re/ovs/fulltext.00006324-200401000-00004.htm

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85. Basic Genetics - Causes Of Hearing Loss - My Baby's Hearing girl Stickler syndrome The hearing loss in Stickler syndrome is usually conductive, although some losses may be mixed or sensorineural. http://www.babyhearing.org/HearingAmplification/Causes/genetics.asp

Causes of Hearing Loss Basic Genetics What Are the Most Common Forms of Genetic Hearing Loss? Of the 50% of the genetic forms of hearing loss, an estimated 70% are due to recessive causes, about 15% have a dominant cause; and the remaining 15% include all the other forms of inheritance. GENETIC RECESSIVE 70% NON-GENETIC AND UNKNOWN DOMINANT 15% OTHER GENETIC 15% Genetic scientists subdivide genetic hearing loss into two general categories: "Non-Syndromic" (meaning hearing loss and nothing else) and "Syndromic" (meaning hearing loss with other clinical findings). By far, the more common is Non-syndromic hearing loss which includes 2/3 of all genetic hearing losses. SYNDROMIC NON-SYNDROMIC RECESSIVE RECESSIVE NON-GENETIC AND UNKNOWN DOMINANT DOMINANT OTHER GENETIC OTHER GENETIC What is the Most Common form of genetic hearing loss?

86. Related Sites - Stickler's Syndrome This page was last updated on February 22, 2003. Stickler s Involved People SIP Family Village s Listing - Stickler syndrome http://oregonsticklers.homestead.com/sticklerrealtedsites.html

Related Sites - Stickler's Syndrome This page was last updated on: February 22, 2003 Stickler's Involved People - SIP Family Village's Listing - Stickler Syndrome Stickler Syndrome Support Group - UK Dave Hawley's Stickler Syndrome Page ... Canadian Chapter of Stickler Involved People

87. Kniest And Spondyloepiphyseal And Spondylometaphyseal Dysplasia Page Medical Inf WagnerStickler s syndrome. Other links Ulna Metaphyseal Dysplasia syndrome, This site has comprehensive medical links about Stickler syndrome. http://www.ksginfo.org/info.html

Information about Kniest, SED, and SMD Please click on the condition you want to learn more about. Find a Skeletal Dysplasia (dwarfism) clinic Kniest Sydrome Metatropic Dysplasia Type II : See Kniest (Kniest is called Metatropic Type II by accident really and is very different from metatropic dwarfism itself.) Spondyloepiphyseal dysplasias (SED) : SED Congenita (SEDC), SED Tarda, SED X-Linked, SED-Toledo type. Spondylometaphyseal dysplasias (SMD) : SMD Corner Fracture Type, SMD Kozlowski Type (SMD-K) Wagner-Stickler's Syndrome. Other links : Ulna Metaphyseal Dysplasia Syndrome, Spondyloepimetaphyseal dysplasia type Strudwick (SEMD) also known as spondylometaepiphyseal dysplasia type Strudwick (SMED) Specific Medical Conditions common to people with Kniest, SED, and SMD: Pierre Robin Syndrome Back Care Eye problems Hip Problems Knee problems Problems with IV placement and tips for surgeries. Anesthesia issues Overheating Please note that not all complications listed will necessarily occur. Where do all these names come from? See the Medical Terms page.

88. Retinal Detachment MD: Prevention Of Retinal Detachment By Laser Cerclage For Hi Stickler s syndrome is a dominantly inherited condition in which retinal detachment commonly occurs in young adult life often in both eyes. http://www.retinaldetachments.com/Prevention.htm

Callahan Eye Foundation Hospital I ndirect Ophthalmoscope Laser Cerclage Myopia or nearsightedness is frequently discovered in childhood when objects in the distance appear blurred without optical correction. Peripheral retinal lattice degeneration with small hole Marfan's Syndrome dislocated lens Characteristics of Marfan's Syndrome similiar in appearance to 16th President of the US, Abraham Lincoln Tall, particularly long arms and legs, with long slender fingers and toes Prevention of Retinal Detachment Prophylaxis Indirect Ophthalmoscope (IDO) Laser Cerclage High risk eyes are candidates for preventative treatment. Our fourteen years of experience with IDO Laser Cerclage indicates that it is highly effective in preventing retinal detachment in high-risk eyes. Eyes known to have a substantial risk for retinal detachment include the fellow eye or second eye of someone who has experienced retinal detachment in the other eye. Any one who has had cataract surgery has a modestly increased risk of retinal detachment over someone who hasn't and their risk increases slightly if they have had a secondary laser procedure known as YAG capsulotomy, to improve vision. Extremely nearsighted ( myopic) eyes and eyes with

89. Report On The Rare Diseases Research Activities At The National Institutes Of He Stickler syndrome. This disorder of connective tissue causes premature osteoarthritis, retinal detachments, and premature hearing loss. http://rarediseases.info.nih.gov/html/reports/fy2003/nia.html

Report on the Rare Diseases Research Activities at the National Institutes of Health FY 2003 National Institute on Aging (NIA) Overview of Rare Diseases Research Activities The National Institute on Aging conducts and supports biomedical, social and behavioral research, training, health information dissemination, and other programs with respect to the aging process. The Institute does not focus on rare diseases per se; however, certain rare conditions/diseases are studied as they relate to the process of aging or the diseases of aging. Of particular interest are progeroid syndromes such as Werner syndrome, Bloom’s syndrome, and Cockayne syndrome that have implications for age-related diseases. Recent Scientific Advances in Rare Disease Research Werner Syndrome (WS) WS is a rare autosomal recessive disorder characterized by genome instability and premature onset of several age-related diseases. The gene defective in WS encodes a DNA helicase (WRN) that belongs to the RecQ helicase family. Researchers have purified a multisubunit complex from human cells that contains WRN and several associated polypeptides and have found that this complex has multiple enzymatic activities. Recently, investigators have discovered a number of new functional and physical protein interactions with Werner protein, suggesting that the WRN protein in involved in DNA repair processes, in particular the pathways of base excision repair and recombination. Ongoing and future studies are being directed towards elucidation of the causes of the accelerated aging phenotype in WS that may have implications to both the aging of cells and organisms in general.

90. Genetic Disorders; Treatment, Prevention, Cure Once Stickler syndrome is diagnosed, a coordinated multidisciplinary Stickler syndrome should be considered in any infant that is displaying signs of. http://www.healthlinkusa.com/119W.asp

FREE. Support groups, personal stories, discussion area and more on HealthlinkUSA. Click here View health conditions and concerns alphabetically. A B C D ... Talk Health Friday September 9, 2005 Search information from 1,000's of today's best health sites Genetic Disorders 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? Once Stickler syndrome is diagnosed, a coordinated multi-disciplinary approach is suggested. This should include... Stickler syndrome should be considered in any infant that is displaying signs of... Related Searches Products and Services Genetic Disorders Human Genetic Disorders Genetic Matters 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.

91. NORD - National Organization For Rare Disorders, Inc. Stickler syndrome refers to a group of disorders of the connective tissue Stickler syndrome Type I; (STL1) This form is responsible for about 75% of http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Stickler Synd

92. Arthritis Pain Management Information support and the latest news about Stickler syndrome. www.stickler.org.uk A UK site with information and support about Stickler syndrome http://www.arthritismontreal.ca/links.htm

Alternative (Complementary) Therapies Ankylosing spondylitis Arthritis Associations (arthritis related, Canadian) ... Tendonitis (see Repetitive Stress) Alternative Therapies www.canadian-health-network.ca An informative site with resources about complementary and alternative therapies for arthritis www.nccam.nih.gov USA National Centre for Complementary and Alternative Medicine's website www.arthritisinsight.com A non-profit American organization of online arthritis sufferers. www.arthritis.ca Canadian Arthritis Society's national website on arthritis and related conditions www.immunesupport.com Information on diet for boosting the immune system www.creakyjoints.com This site is full of humor and support for people with all kinds of arthritis-related illnesses. Ankylosing Spondylitis www.spondylitis.org An informational website from the Spondylitis Association of America www.nass.co.uk A site devoted to Ankylosing Spondylitis, including exercise and support Arthritis www.cihr-irsc.gc.ca/institutes/imha

93. Journal syndrome present, and one of the most common related syndromes is Stickler syndrome. you should click here to learn more about Stickler syndrome. http://home.comcast.net/~garland_neal/journal.htm

Jaw Distraction Journal Week 3 - (Feb.29 - Mar.6 '00) We have an appointment on March 9th with the General Surgeon (Dr. Meier), to discuss the G-tube. Garland Neal is doing good, his swelling is almost all gone and you can now feel the hardware that is screwed to his jaw bone. We are in the process of getting our insurance to approve the in-home speech and oral/motor threapy twice a week. This therapy will help Garland Neal master swallowing and tongue control. click here to learn more about Stickler Syndrome. Some experts will say that every baby born with PRS has a genetic syndrome associated with it and that there is no such thing as "isolated PRS". At this point, I'm not sure what I think. Garland Neal also had his 4 month check-up (a little late), he got his immunizations and is healthy for now. We are getting ready for April 11th.... surgery date! Garland Neal also broke his all time record this week by pulling out his NG tube 4 times. I can't wait for that G-tube, he won't be able to pull it out as easy, which means less stress for both of us. :-) Week 10 - (Apr.19 - Apr.25 '00) Things are getting better everyday....Garland Neal had his follow-up visits this week. Dr. Hobar said everything looked great and we don't have to come back for THREE months...wow! Dr. Meier wants to see us on May 11th to place the button on his feeding tube. Right now, until the site heals, there is a long tube coming out of his belly. Four weeks after placing the tube, they replace it with a short tube that opens with a button and is flush with his body. He will finally be able to play on his tummy once we get the button. April 28th is the big day.....that's when we will try the cap on Garland Neal's trach..I'm getting nervous, but I think he'll do fine because he's tolerating the Passy Muir valve so well now.

94. Exercise Suggestions To Loose Weight I am 40 years old, suffer from moderate Stickler s syndrome (a genetic connective tissue disorder caused by a collagen defect see http://www.medhelp.org/forums/Fitness/messages/146.html

Exercise suggestions to loose weight Forum: The Exercise and Fitness Forum Topic: Weight Loss and Weight Gain Subject: Exercise suggestions to loose weight From To Post oregonsticklers I am 40 years old, suffer from moderate Stickler's Syndrome (a genetic connective tissue disorder caused by a collagen defect - see www.sticklers.org/sip/def.html), are 60 lbs overwieght, and are in need of exercises that I can use to lose weight without worsening my condition. A freind of mine suggested the elliptical machine. What are your thought on that? Any suggestions are appreciated. LukeL That would be an ideal choice. It is no impact and is almost like riding a bike while standing. If you find a good machine you will have multiple tension settings and elevation setings. Also remember that in your case and most cases less is more. If you do 15-20 minutes of slow light exercise 5 times week along with proper diet you will lose weight. sodeba Thanks Luke..I was wondering about the 15 to 20 minutes workout that is supported by Body For Life. willtme Congratulations on the motivation to exercise and better your condition. You no doubt have had a rough time so far and your dedication to improve your situation makes you a very strong person.

95. Blind World - Disease-specific Organizations. Provides information and support to people with Stickler syndrome, a connective tissue disorder that affects bones and joints, the heart, eyes, and ears. http://www.home.earthlink.net/~blindworld/LINKS/disease.htm

Blind World Disease-specific Organizations. (The) Achromatopsia Network. P.O. Box 214, Berkeley, CA 94701-0214. E-mail: Editor@achromat.org URL: http://www.achromat.org AMD Alliance International. 1314 Bedford Avenue, Suite 113, Baltimore, Maryland 21208. URL: http://www.amdalliance.org/ American Autoimmune Related Diseases Association, Inc. (AARDA). 22100 Gratiot Avenue, East Detroit, MI 48021. (800)598-4668 (Literature Requests). URL: http://www.aarda.org/ P.O. Box 15247, Chattanooga, TN 37415-0240. Toll-free: 1-800-723-4238. URL: http://www.behcets.com American Health Assistance Foundation. 15825 Shady Grove Road, Suite 140, Rockville, MD 20850. (Phone: 301) 948-3244. Toll-free: 1-800-437-2423. URL: http://www.ahaf.org Association for Macular Diseases. 210 East 64th Street, New York, NY 10021. Phone: (212) 605-3719. URL: http://www.macula.org/ Benign Essential Blepharospasm Research Foundation. P.O. Box 12468, Beaumont, TX 77726-2468. Phone: (409) 832-0788.

96. Eye Health Organizations Provides information and support to people with Stickler syndrome, a connectivetissue disorder that affects bones and joints, the heart, eyes and ears. http://www.visionrx.com/library/resources/org_specific.asp

Health Center Dictionary Encyclopedia Innovation Spotlight ... Eye Care Library Eye Health Organizations The following organizations provide eye health-related information to the public. You may find it useful to contact one or more of these organizations for request information. These organizations also may be able to refer you to resources in your area. Inclusion in this list does not imply endorsement by VisionRx.com. Directory of Organizations for Specific Visual Impairments and Diseases Achromatopsia Network P.O. Box 214 Berkeley, CA 94701-0214 Editor@achromat.org http://www.achromat.org o Provides information about achromatopsia and the resources available to meet the special needs of those affected by this disorder, which is characterized by severe color vision deficiency and poor visual acuity. Seeks to promote awareness and education about achromatopsia. Assists patients and family members in networking. Publishes a newsletter and other publications. American Behcet's Association P.O. Box 27494

97. Links Translate this page Distribute information and experiences about Stickler syndrome and those it affects. Exercising in water works well for arthritis sufferers. http://www.pfd-a.com/links.html

LINKS // Life Jacket-Adapted PFD-A.COM Notre association, "un fauteuil à la mer" qui oeuvre AQUATIC ACCESS INC . offers a full line of water-powered lifts, providing disabled access to in-ground and above-ground pools and spas. http://www.aquaticaccess.com/lto.htm ALACD ARPA ARPA is proud to be a key partner in the Alberta initiative of the Active Living Alliance for Canadians with a Disability Active Living Alliance for Canadians with a Disability ALACD : July 2004: Tubing and swimming,The water enjoyments! Life jacket-Adapted Inc. supplies the protection equipments for Canadians. ALACD : Juillet 2004, Le tubing et la natation, les joies de l'eau! Taylor Park, Osgoode, (Ottawa), Ontario, Canada (click for video) Infinitec / UCP Chicago Infinite potential through assistive technology South Portland Alpha One has helped thousands of people with disabilities live more independently in all aspects of their lives 5p - Society Cri du Chat Syndrome magique!

98. Digital Media Access Group - Disability Access To Virtual Learning This male student has Stickler syndrome. He has poor eyesight and uses both laptop and desktop Student D (Stickler syndrome, poor hearing and eyesight. http://www.computing.dundee.ac.uk/projects/dmag/resources/casestudies/stilesfull

99. Let's Face It: Resources For Specific Conditions Proteus syndrome. Rombergs. Scleroderma. Sjogren s syndrome. Stickler. TMJ. Treacher Collins syndrome. Trigeminal Neuralgia. Vascular Birthmarks http://www.faceit.org/spc_org.html

SUPPORT AND INFORMATION FOR: RESOURCES FOR SPECIFIC CONDITIONS This section contains organizations and resources grouped by condition (i.e., cleft palate, crouzon syndrome, moebius syndrome, cancer, etc.). ACOUSTIC NEUROMA Acoustic Neuroma Association Over 56 support groups and a quarterly newsletter. Their September 2002 newsletter had a very interesting article titled, Modern Management of Rehabilitation of the Eye in Facial Paralysis Lois White, Executive Director 600 Peachtree Pkwy, Ste. 108 Cumming, GA 30041-6899 (770) 205-8211 - Phone (770) 205-0239 - Fax E-mail: anausa@aol.com Web: http://www.anausa.org ANA/NJ - Acoustic Neuroma Association of New Jersey Web: http://www.ananj.org ALBINISM AND HYPOPIGMENTATION National Organization for Albinism and Hypopigmentation (NOAH) Chapters, newsletter, information packets, and conferences. P.O. Box 959, East Hampstead, NH 03826-0959 E-mail: webmaster@albinism.org Web: http://www.albinism.org ALOPECIA AREATA National Alopecia Areata Foundation Bimonthly newsletter and 50 support groups in North America.

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