21. TJ's Journal - Learning About Apert Syndrome About apert syndrome and how it has affected the life of a baby boy named TJ and his family. http://www.califariel.com/tj/index.html

Welcome, Family and Friends to... TJ's Progress TJ's Family Contact Us About Apert Syndrome ... E-mail Us CF Webring is on the ASLinks Page TJ's visitors count FastCounter by bCentral Update on TJ - 11/25/2000 Well, Taylor's coming upon a year old now, and he's been through quite a lot. This little boy has been the strongest person we've ever known... Read more progress Hi - I'm TJ . My full name is Taylor Jacob Wilson, and I was born on December 15, 1999. I weighed 9.2 lbs. and was 21 inches long. I guess you could say I'm a pretty special baby. You see, I was born with Apert Syndrome . You'd probably think I was very unlucky, but the truth is, I have so much love and help surrounding me from all my family and friends, that I feel very lucky in spite of my disorder. I have a long and serious journey ahead of me. My parents, Mark and Cynthia Wilson, have spent a tremendous amount of time educating themselves and fighting for the right care for me. I spent a good portion of my first month in and out of hospitals learning to eat and breathe (two very important things, my mom said). I have been gaining weight and sleeping a little more. Apert Syndrome is extremely rare. Recent figures show less than 200 cases in the U.S.. It's classified more commonly as a craniofacial disorder, and for me that means lots of operations with the 1st one now complete and the next one in 3 months

22. Crouzon's Syndrome Crouzon's and Apert's Syndrome OVERVIEW Crouzon and apert syndromes are the most common of the craniosynostosis syndromes. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

23. Special Child: Disorder Zone Archives - Apert Syndrome apert syndrome is a rare genetic disorder that is characterized by specific The mutation can be inherited from a parent who has apert syndrome or it can http://www.specialchild.com/archives/dz-020.html

Disorder Zone Archives Apert Syndrome Nicholas Graves Emily Krebs Introduction Apert syndrome is a rare genetic disorder that is characterized by specific craniofacial and limb abnormalities. It is caused by a genetic mutation in the FGFR2 gene on chromosome 10. The mutation can be inherited from a parent who has Apert syndrome or it can be a spontaneous (new) mutation. Studies show that Apert syndrome tends to occur more often in children with older fathers. Furthermore, all new mutations (those that have not been inherited by an affected parent) have been shown to occur exclusively in the FGFR2 gene received by the father. Apert syndrome occurs in 1 out of 100,000 to 160,000 live births and affects males and females equally. The first reported case of the syndrome was in 1848 by S.W. Wheaton, and in 1906, a French physician named E. Apert described nine cases and defined the syndrome. Features and Characteristics The following characteristics have been found in children with Apert syndrome: Prematurely fused cranial sutures Retruded (or sunken) mid-face Fused fingers Fused toes Brachycephaly (short wide head) Acrocephaly (high prominent forehead) Flattened back of skull Prominent eyes - may be spaced widely apart or slant downward Strabismus Prominent mandible Depressed nasal bridge and small anteverted nose Down-turned corners of the mouth Low set ears (as well as hearing loss) Cleft palate Severe acne in teens Hydrocephalus Dental abnormalities (malposition of the teeth, crowding of the teeth, delayed tooth eruption, high-arched narrow palate, thickened ridges that support the teeth)

24. Krista's Page Written by her father, this contains biographical detail about living with apert syndrome. http://www.apert.org/horning/index.htm

Krista was born July 21, 1987. We had no idea that there was any kind of problem until she was born and, of course, had never heard of Aperts Syndrome. In addition to the usual problems with the head, fingers and toes Krista had choanal atresia (bone completely blocking the inside of her nose) and fused elbows and shoulders. She has had over 30 operations; more than half were in her first couple years on her nose to get it open and keep it that way. Just last summer (1996) she had some rebuilding done inside her nose and was finally able to breath through it! Krista is in third grade. She went to a small private school for the first years. It helped her a lot to have the smaller class size. This year we are home schooling Krista to give her a more one-on-one setting, less distraction, and more flexibility in working on some areas. Her favorite subjects are spelling and English. She likes to read. Her favorite books are the Bible and "Charlotte's Web." Last year she did a display on surgery for her science fair and did a great job. She got first place in her class and 49 out of 50 at the regional/state contest. She obviously knew her subject. I think it was the most that some people had ever seen her talk (she's a little shy). She also likes drawing and coloring - she wants to be an artist when she grows up. Krista's fused elbows and shoulders, and stiffness in her hips and ankles make it hard to do a lot of activities. One sport she has been able to do is downhill skiing. A local organization teaches skiing to disabled people using adaptive equipment and volunteer helpers. Krista started when she was 5 and has used less extra equipment each year. Just this year she made it down the "big hill" (at least it's big for Minnesota) all on her own! An extra treat is that Bob (dad) is her helper.

25. Apert Syndrome apert syndrome is a genetic disease. It can be inherited or it may occur without a known family history. It is characterized by premature closure of http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

26. Www.icondata.com/health/pedbase/files/APERTSYN.HTM Craniofacial Dysotosisapert syndrome or acrocephalosyndactyly syndromes are rare conditions. The incidence of infants born with apert syndrome is one for every 100000 to http://www.icondata.com/health/pedbase/files/APERTSYN.HTM

27. Intro Screen... Written by father of child with apert syndrome. Contains biographical detail, and links to apert syndrome stories and support sites. http://members.aol.com/ApertSyn/index.html

Skip Intro Skip Intro

28. Crouzon Syndrome Sagittal Synostosis Metopic Synostosis Unilateral Coronal Synostosis Bicoronal Synostosis Posterior Plagiocephaly apert syndrome. Crouzon Syndrome http://www.erlanger.org/craniofacial/book/craniosynostosis/cranio_8.htm

29. Apert Syndrome Feature article describes apert syndrome, its symptoms, diagnosis, and treatment. http://rarediseases.about.com/cs/musclesbonesjoints/a/040503.htm

var zLb=12; var zIoa1 = new Array('Suggested Reading','Internet links on Apert syndrome','http://rarediseases.about.com/cs/apertsyndrome/index.htm','"Babyface," about a child with Apert','http://rarediseases.about.com/cs/bookreviews/tp/memoir.htm'); var zIoa2 = new Array('Elsewhere on the Web','Apert Support and Information Network','http://www.apert.org'); zJs=10 zJs=11 zJs=12 zJs=13 zc(5,'jsc',zJs,9999999,'') zfs=0;zCMt='a70' About Rare / Orphan Diseases Rare Diseases A - B Rare Diseases: A Apert Syndrome Rare Diseases Essentials Rare Diseases: Basic Information Rare Diseases Support Groups ... Help zau(256,140,140,'el','http://z.about.com/0/ip/417/C.htm','');w(xb+xb+' ');zau(256,140,140,'von','http://z.about.com/0/ip/496/6.htm','');w(xb+xb); FREE Newsletter Sign Up Now for the Rare / Orphan Diseases newsletter! See Online Courses Search Rare / Orphan Diseases Stay up to date! Compare Prices Email to a friend ... Print this page Suggested Reading Internet links on Apert syndrome "Babyface," about a child with Apert Elsewhere on the Web Apert Support and Information Network Most Popular Muscular Dystrophy ALD and Lorenzo's Oil Progeria Syndromes Leprosy (Hansen's Disease) ... The Elephant Man What's Hot Muscular Dystrophy Autoimmune Kidney Disease Minamata Disease Charcot-Marie-Tooth Disease ... Meckel-Gruber Syndrome adunitCM(150,100,'x55')

30. Apert Syndrome Links to articles, information, and resources for apert syndrome. http://rarediseases.about.com/cs/apertsyndrome/

zJs=10 zJs=11 zJs=12 zJs=13 zc(5,'jsc',zJs,9999999,'') zfs=0;zCMt='a70' About Rare / Orphan Diseases Rare Diseases Essentials ... Help zau(256,140,140,'el','http://z.about.com/0/ip/417/C.htm','');w(xb+xb+' ');zau(256,140,140,'von','http://z.about.com/0/ip/496/6.htm','');w(xb+xb); FREE Newsletter Sign Up Now for the Rare / Orphan Diseases newsletter! See Online Courses Search Rare / Orphan Diseases Apert Syndrome Guide picks A genetic disorder which causes malformations in the head, face, and limbs. Apert Syndrome Feature article describes Apert syndrome, its symptoms, diagnosis, and treatment. From the About.com Guide to Rare/Orphan Diseases. Apert Syndrome Information and Support Network Personal site offer's child's story as well as stories and photos of many other children affected by Apert syndrome. Good site to view if you want to see what the syndrome looks like. Yahoo! Club Apert Information on how to join the Club Apert chat room on Yahoo! Sociedad Apert en Argentina "Somos un grupo de papás de chicos con el síndrome de Apert. Nos estamos reuniendo para compartir historias, experiencias, fotos, charlas médicas, bibliografía y toda aquella información que pueda ser útil." Topic Index Email to a Friend Our Story Be a Guide ... Patent Info.

31. Apert Syndrome apert syndrome is a genetic disease. It can be inherited or it may occur withouta known family history. It is characterized by premature closure of the http://www.healthcentral.com/ency/408/001581.html

Dr. Dean TV Specials Newsletters Home ... Health Tools Search Choose a Health Topic * All Health Topics * Acne Addictions AIDS/HIV Alcohol Abuse Allergies Alternative Medicine Alzheimer's Arthritis Asthma Attention Deficit Disorder (ADHD) Backache Bipolar Affective Disorder Birth Control Blood Blood Pressure Bone/Joint/Tendon Bowel Brain Breast cancer Cancer Cerebral Palsy Cholesterol Cramps Crohn's Disease Cysts Dental/Oral Depression Diabetes Diet, Fitness, Looks Disabled/Special Needs Drug Abuse Ear/Nose/Throat Eating/Appetite Eczema Encephalitis Eye/Vision Fatigue Fever Flu Food Poisoning Foot Gallbladder Gastrointestinal Genetic/Congenital GERD/Heartburn Hair Loss Hair/Scalp Headache Hearing Heart Disease, Stroke Heat/Sunstroke Hepatitis Hernia Herpes High Blood Pressure Hormonal Immune Disorders Immunizations/Vaccines Impotence Incontinence/Bladder Infections Injuries Kidney/Urinary Kids Learning Disabilities Liver Lung Cancer Men Menopause, Postmenopause Migraine Mobility/Balance Multiple Sclerosis Muscle Neural Nosebleeds Pain Parasites Pituitary PMS Pregnancy Prostate Cancer Prostate Disorders Psoriasis Psychological Raynaud's Disease Respiratory Reye Syndrome Rheumatoid Arthritis Schizophrenia Seniors Sensory Sexually Transmitted Disease Skin Sleep Speech Disorders Spinal Thyroid Trauma Weight Loss Women Yeast Infections Home Health Encyclopedia Apert syndrome Apert syndrome Injury Disease Nutrition Poison ... Prevention Apert syndrome Definition: Apert syndrome is a genetic disease. It can be inherited or it may occur without a known family history. It is characterized by premature closure of the seams between the skull bones, which results in a peaked head and an unusual facial appearance.

32. Crouzon's Syndrome Crouzon and apert syndromes are the most common of the craniosynostosis In addition, children with apert syndrome have syndactaly (webbing) of the hands http://www.kidsplastsurg.com/crouzon.html

Crouzon's and Apert's Syndrome OVERVIEW Crouzon and Apert syndromes are the most common of the craniosynostosis syndromes. Craniosynostosis refers to the early closing of one or more of the sutures of an infant's head. The skull is normally composed of bones which are separated by sutures. This diagram shows the different sutures which can be involved. As an infant's brain grows, open sutures allow the skull to expand and develop a relatively normal head shape. If one or more of the sutures has closed early, it causes the skull to expand in the direction of the open sutures. This can result in an abnormal head shape. In severe cases, this condition can also cause increased pressure on the growing brain. The coronal suture goes from ear to ear on the top of the head and fusion of both sides ( bicoronal synostosis or brachycephaly) results in a very flat, recessed forehead. This is the suture fusion found most often in Crouzon and Apert Syndromes. In addition to craniosynostosis these children also have fusion of the sutures or bones in the cranial base and midface, and shallow eye sockets. This gives the appearance of a flat midface and eyes which protrude. In addition, children with Apert Syndrome have syndactaly (webbing) of the hands and feet.

33. Apert Syndrome apert syndrome Pen Pals PO Box 115 Providence, RI 02901 Phone (401) 4219076Contact Christine Bucci. Also See http://www.kumc.edu/gec/support/apert.html

Apert syndrome About Apert 9 Jones Street New York City, NY 10014 Phone: (212) 645-7038 Contact: Augusta Apert Syndrome Pen Pals PO Box 115 Providence, RI 02901 Phone: (401) 421-9076 Contact: Christine Bucci Also See: Organizations for craniofacial conditions Teeter's page - child with Apert Syndrome, links to resources Apert Syndrome Listserv: http://www.apert.org/listserv.htm Genetic Societies Clinical Resources Labs ... Search Genetics Education Center Debra Collins, M.S. CGC , Genetic Counselor, dcollins@kumc.edu This site subscribes to the principles of the HONcode (Health on the Net, Code of Conduct for Medical and Health Web Sites) of the Health On the Net Foundation

34. AllRefer Health - Apert Syndrome (Acrocephalosyndactyly) apert syndrome (Acrocephalosyndactyly) information center covers causes, prevention,symptoms, diagnosis, treatment, incidence, risk factors, signs, tests, http://health.allrefer.com/health/apert-syndrome-info.html

AllRefer Channels :: Yellow Pages Reference Health Home ... Contact Us Quick Jump ADD/ADHD Allergies Alzheimer's Disease Arthritis Asthma Back Pain Breast Cancer Cancer Colon Cancer Depression Diabetes Gallbladder Disease Heart Attack Hepatitis High Cholesterol HIV/AIDS Hypertension Lung Cancer Menopause Migraines/Headaches Osteoporosis Pneumonia Prostate Cancer SARS Stroke Urinary Tract Infection 1600+ More Conditions Alternative Medicine Health News Symptoms Guide Special Topics ... Medical Encyclopedia Web health.allrefer.com You are here : AllRefer.com Health Apert Syndrome Apert Syndrome Definition Prevention Treatment Expectations or Prognosis ... Go To Main Page Alternate Names : Acrocephalosyndactyly Definition Apert syndrome is a genetic disease. It can be inherited or it may occur without a known family history. It is characterized by premature closure of the seams between the skull bones, which results in a peaked head and an unusual facial appearance. Syndactyly Apert syndrome is transmitted as an autosomal dominant trait (which means that only one parent needs to have the condition for a child to potentially be affected). Some cases also appear spontaneously without a family history. The condition is caused by mutations in a gene called fibroblast growth factor receptor 2. This mutation causes some of the bony sutures of the skull close prematurely (a process called craniosynostosis) which can cause asymmetric growth and give the head a distorted shape. The face is distinctive looking and there may be full-length webbing or fusion between the 2nd, 3rd and 4th fingers, as well as the toes. In addition, as the child grows, the bones in the hands and feet become progressively fused, which reduces flexibility and function.

35. AllRefer Health - Apert Syndrome Treatment (Acrocephalosyndactyly) apert syndrome (Acrocephalosyndactyly) information center covers Treatment. http://health.allrefer.com/health/apert-syndrome-treatment.html

AllRefer Channels :: Yellow Pages Reference Health Home ... Contact Us Quick Jump ADD/ADHD Allergies Alzheimer's Disease Arthritis Asthma Back Pain Breast Cancer Cancer Colon Cancer Depression Diabetes Gallbladder Disease Heart Attack Hepatitis High Cholesterol HIV/AIDS Hypertension Lung Cancer Menopause Migraines/Headaches Osteoporosis Pneumonia Prostate Cancer SARS Stroke Urinary Tract Infection 1600+ More Conditions Alternative Medicine Health News Symptoms Guide Special Topics ... Medical Encyclopedia Web health.allrefer.com You are here : AllRefer.com Health Apert Syndrome : Treatment of Apert Syndrome Apert Syndrome Definition Prevention Treatment Expectations or Prognosis Complications Support Groups Calling Your Health Care Provider ... Go To Main Page Alternate Names : Acrocephalosyndactyly Apert Syndrome Treatment Treatment consists of surgery to correct the skull, mid-face and palate, after evaluation by a multispecialty cranio-facial surgery team at a children's medical center. To optimize treatment of hearing problems, see a hearing specialist. Previous Top Next Jump to another section Definition Apert Syndrome Prevention Apert Syndrome Treatment Apert Syndrome Prognosis Apert Syndrome Complications Apert Syndrome Support Groups Calling Your Health Care Provider Topics that might be of interest to you Skull X-Ray Other Topics Skeletal Limb Abnormalities Review Date : 8/6/2003 Reviewed By : Douglas R. Stewart, M.D., Division of Medical Genetics, Hospital of the University of Pennsylvania, Philadelphia, PA. Review provided by VeriMed Healthcare Network.

36. Apert Syndrome a CHORUS notecard document about apert syndrome. craniosynostosis (prematuresutural fusion) Crouzon syndrome cloverleaf skull (Kleeblatschaedel) http://chorus.rad.mcw.edu/doc/00026.html

CHORUS Collaborative Hypertext of Radiology Nervous system About CHORUS Search Feedback Apert syndrome "acrocephalosyndactyly" acrocephaly (coronal craniosynostosis syndactyly Charles E. Kahn, Jr., MD - 2 February 1995 Last updated 26 May 2004 Related CHORUS documents: craniosynostosis (premature sutural fusion) Crouzon syndrome clover-leaf skull (Kleeblatschaedel) scaphocephaly ... adrenoleukodystrophy Search for related articles: AJR American Journal of Roentgenology PubMed : index to biomedical literature ... Medical College of Wisconsin

37. Apert Syndrome apert syndrome. acrocephalosyndactyly . acrocephaly (coronal craniosynostosis);syndactyly. Home Nervous system Disclaimer. © 2002, CE Kahn, Jr. http://chorus.rad.mcw.edu/to-go/00026.html

Apert syndrome "acrocephalosyndactyly" acrocephaly (coronal craniosynostosis syndactyly Home Nervous system

38. Apert Syndrome - Genetics Home Reference Where can I find additional information about apert syndrome? What if I stillhave specific questions about apert syndrome? http://ghr.nlm.nih.gov/condition=apertsyndrome

Home What's New Browse Handbook ... Search Apert syndrome Related Gene(s) Quick links to this topic NIH Publications National Institutes of Health MedlinePlus Health Information Educational resources Information pages Patient support For patients and families Gene Reviews Clinical summary Gene Tests DNA test labs ClinicalTrials.gov Research studies PubMed Recent literature OMIM Genetic disorder catalog References Apert syndrome On this page: What is Apert syndrome? How common is Apert syndrome? ... help with understanding Apert syndrome? What is Apert syndrome? Apert syndrome is a genetic disorder characterized by the premature fusion of certain bones of the skull (craniosynostosis), which prevents further growth of the skull and affects the shape of the head and face. In addition, a varied number of fingers and toes are fused together (syndactyly). Many of the characteristic facial features of Apert syndrome result from the premature fusion of the skull bones. The head is unable to grow normally, which leads to a sunken appearance in the middle of the face, bulging and wide-set eyes, a beaked nose, and an underdeveloped upper jaw leading to crowded teeth and other dental problems. Shallow eye sockets can cause vision problems. Hearing loss may be present. Recurrent ear infections are common and may be associated with an opening in the roof of the mouth (cleft palate). Acne can be severe. Additionally, individuals with Apert syndrome have webbed or fused fingers and toes. The severity of the fusion varies; at a minimum, three digits on each hand and foot are fused together. In the most severe cases, all of the fingers and toes are fused. Intellectual development also varies, ranging from normal to mild or moderate mental retardation.

39. ► Apert Syndrome A medical encycopedia article on the topic apert syndrome. http://www.umm.edu/ency/article/001581.htm

var MenuLinkedBy='AllWebMenus [2]', awmBN='530'; awmAltUrl=''; Disease Nutrition Surgery Symptoms Injury ... Z Maryland Medical Center Programs Department of Orthopaedics UM Hospital for Children Home Medical Reference ... Encyclopedia (English) Toggle English Spanish Apert syndrome Overview Symptoms Treatment Prevention Definition: A genetic disease which may be inherited or may occur without a known family history. It is characterized by premature closure of cranial sutures (seams between skull bones), which results in a peaked head and an unusual facial appearance. Alternative Names: Acrocephalosyndactyly Causes, incidence, and risk factors: Apert syndrome is transmitted as an autosomal dominant trait (which means that only one parent needs to have the condition for a child to potentially be affected). Some cases also appear spontaneously without a family history. The condition is caused by mutations in a gene called fibroblast growth factor receptor 2. This mutation causes some of the bony sutures of the skull close prematurely (a process called craniosynostosis) which can cause asymmetric growth and give the head a distorted shape. The face is distinctive looking and there may be full-length webbing or fusion between the 2nd, 3rd and 4th fingers, as well as the toes. In addition, as the child grows, the bones in the hands and feet become progressively fused, which reduces flexibility and function. There are several other syndromes which have a similar appearance and include craniosynostosis (premature suture fusion):

40. Apert Syndrome Acrocephalosyndactyly Definition - Medical Dictionary Definitions Online Medical Dictionary and glossary with medical definitions. http://www.medterms.com/script/main/art.asp?articlekey=6605

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