61. Julia's Journey With Spina Bifida Support and information for families who have children or loved ones with the disabling birth defect spina bifida and hydrocephalus. http://www.juliasjourney.com/

to Julia's Journey "The real voyage of discovery consists not in seeking new landscapes, but in having new eyes." M. Proust Throughout you will read stories and information that will hopefully help out and give you some expectations of what's ahead. It will also provide support for new, seasoned parents and loved ones. It will also touch briefly on the scientific aspects of Spina Bifida and Hydrocephalus. However, my main purpose is to share what my family and I felt when we first found out about our daughter and how we continue to feel. I hope you find it comforting, encouraging, informing and strengthing. Additionally and most importantly, I hope this site will make you feel like you're not alone. Remember nothing is written in stone here. Feel WHAT you WANT to feel WHEN you are ready and not a second sooner. If you are just finding out, it's a tough time right now, but in time, your child will show you that gorgeous rainbow of spectacular discoveries. Mine did and she still is. Finally, please

62. AZSBA PROGRAMS. The Arizona spina bifida Association enhances the quality of life for those living with spina bifida by providing services and information. http://www.azspinabifida.org/

PROGRAMS The Arizona Spina Bifida Association enhances the quality of life for those living with spina bifida by providing services and information. The Arizona Spina Bifida Association is a nonprofit 501(c)(3)organization. 100% of funds raised in Arizona stay in Arizona 1001 East Fairmount Avenue Phoenix, Arizona 85014 Toque aqui-para leer esto pagina en espanol *Notice: The information provided here is for informational, educational and entertainment purposes only. It is not intended to replace, and should not be interpreted or relied upon as, medical or professional advice. Your use of this site means that you agree to the terms and conditions detailed in our SB FACTS Welcome Baby Housing CRS Lunch Urinary Supplies ... En Espanol Information Provided by SB Association of America Hydrocephalus Association Association for Spina Bifida and Hydrocephalus ... NEWSLETTER

63. Associazione Toscana Spina Bifida E Idrocefalo (A.T.I.S.B.) L'associazione toscana spina bifida ed idrocefalo fornisce agli associati supporto medico specializzato, favorisce lo scambio di esperienze e promuove campagne di sensibilizzazione ed informazione sulle nuove tecnologie mediche, farmacologiche e chirurgiche. http://www.comune.prato.it/associa/atisb/home.htm

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64. Spina Bifida Association Of South Australia http://www.spinabifida.asn.au/

65. Spina Bifida And Hydrocephlus - Facts General Facts. What is spina bifida? The term spina bifida is derived from the Latin words spina meaning spine and bifida meaning split or divided. http://www.spinabifida.asn.au/facts.html

General Facts What is spina bifida? The term spina bifida is derived from the Latin words 'spina' meaning spine and 'bifida' meaning split or divided. The spine is made up of separate bones called vertebrae, which normally cover and protect the spinal cord. In spina bifida, some of these vertebrae are not completely formed but are split or divided and the defective spinal cord and its coverings usually protrude through the opening. There are different categories of spina bifida including: Occulta The outer part of the vertebrae is not completely joined. The spinal cord and covering (meninges) are undamaged. There are often tufts of hair found at the site of the defect. Meningocele The outer part of the vertebrae is split but the spinal cord is normal. Only the meninges is damaged and pushed out through the opening. Myelomeningocele The outer part of the vertebrae is split with the spinal cord and meninges damaged and protruding from the opening.

66. Ability Camp Inc. Conductive Education And Hyperbaric Oxygen Therapy, HBOT Year round facility that provides five week intensive therapeutic sessions for children with motor disorders such as Cerebral Palsy, Hydro Cephallus, spina bifida, and Brain Injury. http://www.abilitycamp.com/

Conductive Education and Hyperbaric Oxygen Therapy Winter HBOT Special.. $38.50 / hr. or $28.85 / hr. when taken with C.E. Free accommodations provided! An e-mail from a grandpa after his grandson returned from Ability Camp Inc. November 2003 Ability Camp, established in 1995, is a year round facility that provides Conductive Education as a Cerebral Palsy treatment also for children with other motor disorders such as, Hydrocephalus, Brain Injury, Spina Bifida etc. Our five week sessions provide 120 - 145 hrs. that are designed to help teach and motivate children to become more mobile and independent. These intensive sessions provide time for children to learn new skills, repeat, and reinforce these skills on a daily basis. Hyperbaric medicine was originally used for the hyperbaric oxygen treatment of injured divers. Hyperbaric Oxygen Therapy is being offered as an adjunctive therapy for Cerebral Palsy, as a stand alone program with 40, 1hr sessions over a three week period or it can be taken in combination with our Conductive Education programs. We also welcome people who would like to try the chamber as an alternative therapy for T.B.I. , stroke, chronic fatigue, fibromyalgia, M.S. etc.

67. Spina Bifida (open Rug) spina bifida of open rug is een aangeboren afwijking die gepaard kan gaan met meer of minder neurologische afwijkingen aan de benen, stoornissen van de http://www.nvvn.org/voorlichting/SBF_spina_bifida.html

Spina Bifida (open rug) Spina bifida of "open rug" is een aangeboren afwijking die het gevolg is van een ontwikkelingsstoornis van ruggenmerg en wervelkolom. Meestal is de afwijking ter hoogte van de lendenwervels (lumbaal) gelegen, soms ter hoogte van het heiligbeen (sacraal) of de borstwervels (thoracaal). Spina bifida komt onder de bevolking voor in een frequentie van gemiddeld 4,5 per 10.000 geboorten. Bij het voorkomen van spina bifida in de familie is deze frequentie ongeveer 10 maal hoger. Door het innemen van foliumzuur zou dit met 75% verlaagd worden. Omdat de aanleg van her ruggenmerg al in de eerste weken van de ontwikkeling plaatsvindt, dient het foliumzuur (5 mg per dag, gedurende 12 weken) tijdig te worden ingenomen, dat wil zeggen zodra er een zwangerschap wordt gepland met het staken van de anticonceptie. Voor de geboorte kan spina bifida eventueel door testen worden vastgesteld. Bij mensen uit Zuid-Oost Azië komt spina bifida minder voor (2,5 per 10.000 geboorten). Ontstaanswijze In de eerste 3 weken van de ontwikkeling van het embryo ontstaat het ruggenmerg uit een gootje in de huid van de rug. Normaal sluit zich dit gootje tot een buis, de z.g. neurale buis, die dan in de diepte verzinkt. Bij spina bifida is deze ontwikkeling gestoord en is de neurale buis op een bepaalde plaats aan de oppervlakte van de rug open gebleven. Men ziet dan een roze plek op de rug, de zogenaamde myelomeningocèle (wat betekent een blaas bestaande uit ruggenmerg [myelum] en hersenvliezen [meningen, uit te spreken als: mening-gen]). Deze plek is in feite het primitieve ruggenmerg dat als het ware bloot is blijven liggen temidden van de omgevende gezonde huid. In de diepte gaat het zowel naar het hoofdeinde als naar het stuiteinde over in normaal ruggenmerg (zie Figuur 1).

68. ASbH - Selbsthilfegruppe Erfurt/Thüringen - Startseite Die ASbH befaŸt sich mit der F¶rderung von Kindern und Jugendlichen mit angeborener Querschnittsl¤hmung (spina bifida) und / oder der St¶rung des Gehirnwasserkreislaufes (Hydrocephalus). Seit 1991 gibt es die ASbH Selbsthilfegruppe Erfurt/Th¼ringen, in der sich Eltern solcher Kinder zusammengeschlossen haben, um sich Hilfe auf Gegenseitigkeit zu bieten. http://asbh-erfurt.gmxhome.de

window.open('http://www.gmx.net/cgi/hpad','ptxkEx5h1dQE','width=488,height=50'); ASbH - Selbsthilfegruppe Erfurt/Thüringen - Startseite Die A rbeitsgemeinschaft S pina b ifida und H ydrocephalus befaßt sich mit der Förderung von Kindern und Jugendlichen mit angeborener Querschnittslähmung ( Spina bifida ) und / oder der Störung des Gehirnwasserkreislaufes ( Hydrocephalus ). Seit 1991 gibt es die ASbH - Selbsthilfegruppe Erfurt / Thüringen, in der sich Eltern solcher Kinder zusammengeschlossen haben, um sich Hilfe auf Gegenseitigkeit zu bieten. Wir sind Teil der ASbH e.V. Bundesverband ( www.asbh.de Startseite Wir über uns Veranstaltungen ... Impressum

69. Spina Bifida Index, Wake Forest Neurosurgery Internet links on spina bifida, myelodysplasia, tethered spinal cord, and spinal lipomas from the Department of Neurosurgery, Wake Forest University, Winston http://www.wfubmc.edu/surg-sci/ns/sb.html

Spina Bifida / Myelodysplasia Index Department of Neurosurgery Wake Forest University School of Medicine Neurosurgeons/Referrals Neurosurgery Home Schedule an Appointment Links to information about spina bifida, myelodysplasia, tethered spinal cord, spinal lipomas, myeloschisis, split cord malformation, and diastematomyelia. Children with Spina Bifida A Resource Guide for Parents (Highly Recommended) SB-Parents e-mail list server primarily for parents To join the list send a e-mail message to: listserv@onelist.com In the body of the message type: Subscribe SB-Parents Yourfirstname Yourlastname To send messages (after joining) send an email message to: SB-Parents@onelist.com BIFIDA-L e-mail list server for anyone interested in spina bifida/myelodysplasia To join , send a message to: listserv@mercury.dsu.edu In the body of the message type: Subscribe BIFIDA-L Yourfirstname Yourlastname To send messages (after joining) send an email message to: BIFIDA-L@mercury.dsu.edu The Spina Bifida Web Forum BBS (Enter and select Spina Bifida) Spina Bifida Live Discussion (Select Spina Bifida Chat Room) The Usenet Newsgroup alt.support.spina-bifida

70. Index Pr©sentation de l'©tablissement, qui accueille des enfants pr©sentant tous types de handicaps physiques traumatis©s cr¢niens, IMOC, spina bifida, myopathes, h©mi, bi- ou t©trapl©giques, polyhandicap©s. http://www.ecoles.cfwb.be/esfsaive

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71. MedlinePlus: Spina Bifida spina bifida. Printerfriendly version, E-mail this page to a friend. Search MEDLINE for recent research articles on • spina bifida. http://www.nlm.nih.gov/medlineplus/spinabifida.html

@import url(http://www.nlm.nih.gov/medlineplus/images/advanced.css); Skip navigation Other health topics: A B C D ... List of All Topics Spina Bifida Contents of this page: News From the NIH General/Overviews Prevention/Screening ... Children Search MEDLINE for recent research articles on Spina Bifida You may also be interested in these MedlinePlus related pages: Neural Tube Defects Brain and Nervous System Genetics/Birth Defects Latest News Greater Folate Use Could Cut Birth Defects Further (05/06/2004, Reuters Health) From the National Institutes of Health Spina Bifida (National Institute of Neurological Disorders and Stroke) - Short Summary General/Overviews General Information about Spina Bifida (National Information Center for Children and Youth with Disabilities) Spina Bifida (Nemours Foundation) Spina Bifida: General Information (Shriners Hospitals for Children) Clinical Trials ClinicalTrials.gov: Spinal Dysraphism (National Institutes of Health) Prevention/Screening Amniocentesis (March of Dimes Birth Defects Foundation) Also available in: Spanish Folic Acid Information (Spina Bifida Association of America) MedlinePlus: Folic Acid (National Library of Medicine) Also available in: Spanish Prenatal Testing: What's Involved and Who Should Consider It (Mayo Foundation for Medical Education and Research) Triple Screen (March of Dimes Birth Defects Foundation) Also available in: Spanish Research NICHD Study to Test Surgical Technique to Repair Spinal Defect before Birth (National Institute of Child Health and Human Development)

72. Spina Bifida Pers¶nliche Hompage ¼ber Danara, die mit offenem R¼cken auf die Welt gekommen ist. http://www.idcmp.de/Spina_Bifida/spina_bifida.html

Die aktuellen Aussichten Spina Bifida Meine erste Bekanntschaft mit Spina Bifida und die Geburt unserer Tochter Danara Doreen Bei einer routinemäßigen Ultraschalluntersuchung bei unserem ungeborenen Kind stellte der Frauenarzt meiner Freundin eine Unregelmäßigkeit an der Wirbelsäule des Kindes fest. Da er sich aber nicht sicher war, worum es sich handelte, bekamen wir eine Überweisung zu einem Frauenarzt in Hannover der sich mit so etwas besser auskennen sollte. Nach einer sehr genauen Ultraschalluntersuchung durch Dr. Schwerdtfeger in Hannover teilte dieser uns mit, das unser Kind einen Defekt im Rückenbereich hat. Einen sogenannten “ Offenen Rücken”. Erst einmal brach für uns eine Welt zusammen, wir hatten nie auch nur einen Gedanken daran verschwendet, das unser Kind nicht gesund sein könnte. Doch jetzt sollte alles ganz anders sein. Ich glaube, das was uns so zermürbt hat war, das uns niemand unsere ganzen Fragen beantworten konnte. Wird unser Kind je Laufen können ? Wird es eine Chance im Leben haben ? Und viele anderer solcher Fragen standen für uns offen. Dr. Schwerdtfeger hatte uns zwar gesagt, das es auf jedenfall mit einem Kaiserschnitt zur Welt kommt und das es nach der Geburt sofort operiert werden muss, aber was passiert danach mit unserem Kind. Er meinte zwar, das es ein gutes Zeichen wäre, das unser Kind die Beine im Mutterleib selbstständig bewegt, aber das war für uns nur ein schwacher Trost. Zur Zeit heisst es wohl einfach nur abwarten.

73. Evergreen Spina Bifida Association Support and resources for adults, children, parents, family members, friends, and professionals. Evergreen Chapter of ESBA serves the states of Washington, Oregon, Idaho, Montana, and Alaska. http://www.evergreenspinabifida.org/

Mission Statement Evergreen Spina Bifida Association promotes well being, education, and socialization of all people affected by Spina Bifida and fosters public awareness of this birth defect. ESBA serves the states of Washington, Oregon, Idaho, Montana, and Alaska. What is ESBA? Members of the Evergreen Spina Bifida Association are adults or children with spina bifida, parents, friends, relatives, and professionals with an interest in this spinal tube birth defect. We provide emotional support. Our newsletter brings medical news, therapeutic rehabilitative advances, and legislative issues. We offer a lending library Social events are held for all ages to gather, have fun, and share experiences. "New Parent Packets" are available. Scholarships are awarded to members enrolled in continuing education. ESBA is affiliated with the Spina Bifida Association of America (SBAA). Patti Logan, President Michele Hopkins, Vice President, Editor Annette Zweig-Donham, Treasurer Ronda Henry, Secretary How Do I Join? Memberships include $20.00 fee to the National Spina Bifida Association and its newsletter "Insights."

74. Spina Bifida PARA)MEDICI, — Beginpagina — Ziekten en aandoeningen — spina bifida spina bifida Synoniemen SB Open ruggetje. Korte beschrijving http://www.erfocentrum.nl/zena/spina.php

erfelijkheid.nl winkel mail ons nieuwsbrief ... sitemap ZIEKTEN EN AANDOENINGEN ERFELIJKHEID LITERATUUR (PARA)MEDICI Beginpagina ... Ziekten en aandoeningen Spina bifida Spina bifida Synoniemen SB Open ruggetje Korte beschrijving Spina bifida (open rug), letterlijk gespleten wervelkolom, is een aangeboren aandoening, die onderdeel uitmaakt van de neurale-buisdefecten Neurale-buisdefecten zijn aangeboren aandoeningen die als gemeenschappelijke oorzaak hebben het niet sluiten van de neurale buis, de voorloper van het centrale zenuwstelsel. Bij een spina bifida aperta (open vorm van spina bifida) is het defect beperkt tot het gebied van het ruggemerg. Een in ernst variërende ontwikkelingsstoornis van het centrale zenuwstelsel is het gevolg. Meestal is er niet één oorzaak aan te wijzen, maar is er sprake van een combinatie van factoren. Erfelijke -en omgevingsfactoren (wat wil dat zeggen?) spelen een rol, waarbij een tekort aan foliumzuur één van de omgevingsfactoren is. Neurale-buisdefecten kunnen ook in combinatie met andere aangeboren aandoeningen voorkomen, dan kan de oorzaak een chromosoom afwijking zijn. Er kan sprake zijn van een groot defect waarbij een deel van de wervelkolom niet gesloten is. Daarbij kan een deel van de inhoud van de ruggemerg samen met de ruggemergvliezen uitpuilen, een meningomyelocele.

75. Welcome To Kimbers Spina Bifida Site Welcome to Kimber s spina bifida Site! On this site you will see how Kimberly is progressing as she gets older and you may learn http://kimber.cjscreations.com/

Welcome to Kimber's Spina Bifida Site! On this site you will see how Kimberly is progressing as she gets older and you may learn a few things about Spina Bifida. There is a F.A.Q. page, links to other personal Spina Bifida sites, Links to Spina Bifida sites that are not personal for you to learn from, Kimber's Guest book ( please sign ), Some pictures of her when she was born that show what her back looked like, a description of Spina Bifida, other medical links, and much more. Kimber's Progress Requires a Java Enabled Browser. ENTER var site="sm5kimber" CJs Creations

76. Medicine-Worldwide: Spina Bifida Translate this page Medizin für den Laien spina bifida - Definition, Symptome, Diagnose, Häufigkeit, Therapie uvm. spina bifida. http://www.m-ww.de/krankheiten/kinderkrankheiten/spina_bifida.html

Sie befinden sich hier: startseite krankheiten kinderkrankheiten Kinderkrankheiten ... Über uns Spina bifida Seite: vor Kapitelübersicht: Zusammenfassung Definition Ursachen Symptome ... Ratgeber Zusammenfassung Unter einer Spina bifida versteht man eine Fehlbildung der Wirbelsäule und des Rückenmarks ("offener Rücken"), die in verschiedenen Schweregraden auftreten kann. Die Fehlbildung beruht auf einer Verschlussstörung des Neuralrohrs während der 3. bis 4. Embryonalwoche und wird zusammen mit der Anenzephalie Definition Spina bifida heißt wörtlich übersetzt "gespaltenes Rückgrat". Es handelt sich um eine Fehlbildung im Bereich der Wirbelsäule und des Rückenmarks. Da sich die Wirbelsäule und das Rückenmark aus dem Neuralrohr entwickeln, spricht man auch von einem Neuralrohrdefekt. Normalerweise verschmelzen die beiden Bogenanteile der Wirbel zu einem Ring, der das Wirbelloch nach hinten begrenzt. Im Wirbelloch selbst liegt das Rückenmark, umgeben von den Rückenmarkshäuten. Bei der Spina bifida bleibt der Bogenschluss eines oder mehrerer Wirbel aus. Durch den Spalt können sich die Rückenmarksanteile und Nerven sackförmig vorwölben (Myelomeningozele). Befindet sich nur Hirnhaut im Bruchsack, handelt es sich um eine Meningozele. Formen der Spina bifida (aperta) Rachischisis: Meningozele: Meningomyelozele: Ursachen Symptome Harnweginfekte sowie Entleerungsstörungen der Blase, sowohl im Sinne einer "Durchlaufblase" als auch einer "Überlaufblase" beobachtet.

77. Living With Spina Bifida Includes personal stories, pictures, and links. http://www.livingwithsb.com

78. Spina Bifida, The Institute For Neurology And Neurosurgery, New York Myelomeningocele, commonly referred to as spina bifida, is a congenital condition where the spinal cord is exposed to the outside environment at birth. http://nyneurosurgery.org/spinabifida_intro.htm

The degree of neurological deficit is directly relates to the level of the spinal cord defect and its extent. If only the bottom of the spinal cord is involved (conus), there may be only bowel and bladder dysfunction, while the most extensive lesions can result in total paralysis of the legs with accompanying bowel and bladder dysfunction. It is because of the varying neurological manifestations of meningomyelocele that there has been so much controversy regarding appropriate treatment. 170 East End Avenue, New York , NY 10128 email us

79. Ask NOAH About Spina Bifida And Hydrocephalus Ask NOAH About spina bifida and Hydrocephalus. What are spina bifida and Hydrocephalus? Living with spina bifida and Hydrocephalus, Information Resources. http://www.noah-health.org/english/illness/neuro/spinabif.html

Ask NOAH About: Spina Bifida and Hydrocephalus What are Spina Bifida and Hydrocephalus? Care and Treatment The Basics Diagnosis ... Return to Genetic Disorders What is Spina Bifida? The Basics Facts About Spina Bifida and Hydrocephalus - Spina Bifida Association of America Spina Bifida and Hydrocephalus Frequently Asked Questions - Spina Bifida and Hydrocephalus Association of Canada Spina Bifida Ante-Natal Screening - Association for Spinal Bifida and Hydrocephalus, UK Facts About Spina Bifida - Spina Bifida Association of America Facts about Spina Bifida - Spina Bifida Association of America Spina Bifida - Columbia Presbyterian Medical Center ... Spina Bifida - March of Dimes (NOAH Provider) (also in Spanish Spina Bifida - Beth Israel Medical Center Spina Bifida - JAMA ... Spina Bifida - National Information Center for Children and Youth with Disabilities (also in Spanish PDF File of 2 Pages) Spina Bifida: A Neural Tube Defect - QAPSBH What Is Spina Bifida? - Association for Spina Bifida and Hydrocephalus What is Spina Bifida (Myelomeningocele)? - University of Wisconsin Spina Bifida Occulta Spina Bifida Occulta - Association for Spina Bifida and Hydrocephalus Spina Bifida Occulta - Spina Bifida Association of America Spina Bifida Occulta - Royal Children’s Hospital, Australia

80. Agent Orange And Spina Bifida Agent Orange and spina bifida. What s the alleged biological mechanism, showing biological plausibility, through which Agent Orange causes spina bifida? http://www.junkscience.com/news/agent-orange-spina-bifida.html

Agent Orange and Spina Bifida Veterans and Agent Orange: Update 1996, National Academy of Sciences In the continuing saga of Agent Orange, the National Institute of Medicine's Committee to Review the Health Effects in Vietnam Veterans of Exposure to Herbicides has added yet another wrinkle to this tragedy of science, that is. The Committee has determined that there is "limited/suggestive evidence of an association between" exposure to Agent Orange and the birth defect, spina bifida. This association was based on a 1989 Centers for Disease Control (CDC) study that reported a relative risk of 1.7 with a 95 percent confidence interval of 0.6 to 5.0 for spina bifida in children of Vietnam veterans versus non-Vietnam veterans. For the Vietnam veterans group with the greatest opportunity for exposure to Agent Orange, the reported association was 2.7 (95% C.I. 1.2 - 4.5). However: Weak association. For the data overall, the odds ratio was 1.7 - a weak association. For a weak association to hold up, the data must be very good. Data dredging.

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