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41. Neuroscience | Medical Services | Arkansas Children's Hospital
spina bifida, hydrocephalus, epilepsy, craniofacial disorders, spinal cord The spina bifida clinic makes referrals to clinics such as genetics,
http://www.archildrens.org/medical_services/neuroscience.asp

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Neuroscience About the Neuroscience Center of Excellence
The ACH Neuroscience Center of Excellence provides a comprehensive, coordinated center to treat brain, nervous system and neuromuscular disorders. It is the only program in Arkansas devoted to pediatric neurology and neurosurgery. What makes the Neuroscience Center so effective for patients is that it serves as a one-stop facility where patients can see all subspecialists in a convenient setting. Subspecialists may include neurologists, neurosurgeons, neurooncologists, neuropsychologists, geneticists, speech pathologists, child life specialists, social workers, rehabilitation specialists, anesthesiologists and specialty nurses.
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Select the Service: Neurosurgery Neurology Back to Top Problems Diagnosed and Treated Brain tumors Pediatric neurosurgery needs Craniofacial disorders Headache (migraine, tension, sinus infection, and other serious headaches)

42. International Support Groups And Information
A list of international resources compiled by the genetics education center of the International Federation for hydrocephalus and spina bifida
http://ord.aspensys.com/asp/resources/int_info.asp
SEARCH
International Support Groups and Information
Broad-based Rare Diseases Sites
ORPHANET
A database that provides information in Spanish, English, and other languages about more than 950 rare diseases and orphan drugs. It is designed to improve the diagnosis, care, and treatment of rare diseases and to boost research activities in the field. Canadian Organization for Rare Disorders
An educational and informational support network committed to the enhancement of the lives of all persons affected by rare disorders. The organization collects and distributes information about rare disorders, identifies specific groups living with a rare disorder, encourages medical research into the causes and effects of rare disorders, assists with implementation of an orphan drug act, and works to increase public awareness about the existence of rare disorders in Canada. European Organization for Rare Disorders (EURORDIS)
An alliance of patient associations dedicated to improving the quality of life of all people associated with rare diseases in Europe. National Center for Rare Diseases
The Web site of the Italian Health Ministry's Program for Rare Diseases (in Italian). Also lists links to other rare diseases Web sites (http://www.cnmr.iss.it/link/index.html).

43. Spina Bifida
spina bifida resources, support groups, genetic clinics with genetic counselors Queensland Association for People with spina bifida or hydrocephalus
http://www.kumc.edu/gec/support/spinabif.html
Spina Bifida
(lipomeningocele, meningocele, myelomeningocele, anencephaly, neural tube defects)
Spina Bifida Association of America
4590 MacArthur Blvd., NW, Suite 250, Washington, DC 20007-4226 Phone: 800.621.3141or 202.944.3285 - Fax: 202.944.3295 E-mail: sbaa@sbaa.org SBAA Chapters Real Stories Section
Spina Bifida Association of Canada
(L'Association de spina-bifida et d'hydrocéphalie du Canada)
Association for Spina Bifida and Hydrocephalus
ASBAH House, 42 Park Road, Peterborough, PE1 2UQ England Web site: http://www.asbah.org/
International Federation for Hydrocephalus and Spina Bifida ("if")
Cellebroerstraat 16, B-1000 Brussels, Belgium Tel: +32 (0)2 502 0413 - Fax: +32 (0)2 502 1129 E-mail: if@wanadoo.be
Queensland Association for People with Spina Bifida or Hydrocephalus
21 Tillot St., Dutton Park, QLD 4102 Australia
Spina Bifida Association of Western Australia
Arbeitsgemeinschaft Spina bifida und Hydrocephalus (ASbH e.V.)
Bundesverband Münsterstr.13, D-44145 Dortmund, Germany
Telefon (0231) 86 10 50-0 - Telefax (0231) 86 10 50-50
Scottish Spina Bifida Association Also See:

44. Medical References: Spina Bifida
spina bifida is the most common of a group of birth defects called neural tube severe form of spina bifida develop hydrocephalus, or fluid on the brain.
http://www.marchofdimes.com/professionals/681_1224.asp
View All Chapters Find Your Local Chapter September 26, 2005
Select one Folic Acid Pregnancy Prenatal Screening Infections/Diseases Loss Concerns Newborn Information Birth Defects Polio Genetics
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Quick Reference and Fact Sheets Spina Bifida
Spina bifida is the most common of a group of birth defects called neural tube defects (NTDs). The neural tube is the embryonic structure that develops into the brain and spinal cord. Often called open spine, spina bifida affects the backbone and, sometimes, the spinal cord. It is among the most common severe birth defects in the United States, affecting 1,500 to 2,000 babies (one in every 2,000 live births) each year. Spina bifida and other NTDs occur more frequently among Hispanics and whites of European extraction and, less commonly, among Ashkenazi Jews, most Asian ethnic groups and African-Americans.
How does spina bifida affect a child?
In the embryo, there is a tiny ribbon of tissue that folds inward to form a tube. This structure, called the neural tube, forms by the 28th day after conception. When this process goes awry and the neural tube does not close completely, defects in the spinal cord and in the vertebrae (small bones of the spine) can result. There are three forms of spina bifida:
  • Occulta.

45. Spina Bifida
Project 1 evaluates genetic factors associated with spina bifida and related early learning deficits in children with spina bifida and hydrocephalus.
http://www.shrinershq.org/patientedu/spinabifida.html

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Spina Bifida:
General Information
This information was provided by the Houston Shriners Hospital
6977 Main St.
Houston, TX 77030-3701
Telephone 713-797-1616
Fax 713-797-1029 By Cathy Moniaci, R.N., M.S.
Director of Patient Care
Contents
Introduction
Terminology

New day, new hope for children with spina bifida

Common problems in spina bifida
... A chance for a better life
Introduction
Each year in this country, 4,000 children, or an average of 11 children a day, are born with neural tube defects (NTDs) that occur when the spinal column fails to develop and close properly during the first month of pregnancy. The neural tube in a developing fetus later becomes the spinal cord, the backbone that protects the spinal cord, and all the nerves in the body, and any defect in the neural tube can lead to serious health consequences. Spina bifida accounts for half of all neural tube defects, and occurs when part of the spinal cord protrudes through the backbone and fails to develop normally. Thanks to improved medical and surgical care, most children born with spina bifida survive, although they may experience varying degrees of paralysis, loss of sensation in the lower limbs, difficulties with bowel and bladder management, hydrocephalus, learning disabilities, and latex allergies. Anencephaly, which accounts for the remaining 50 percent of neural tube defects, results from the failure of the neural tube to close properly at the upper end, causing a fatal condition in which most of the brain is absent. Infants born with anencephaly usually die at birth or within the first days after birth.

46. ASBAH - Association For Spina Bifida And Hydrocephalus - Genetic Counselling
About ASBAH Contact Us spina bifida hydrocephalus Folic Acid The term genetic counselling means different things to different people.
http://www.asbah.org/Information/Genetic Counselling.html
Site Search Site Search About ASBAH Contact Us Spina Bifida Hydrocephalus ... Recruitment
Genetic Counselling
Introduction
The term 'genetic counselling' means different things to different people. Some place emphasis on the counselling and supportive aspects and see it as an opportunity to talk over problems connected with having healthy children or passing on hereditary conditions. Others see it more in terms of obtaining factual information about genetics, particularly the risks involved and tests available. Perhaps the best approach is a combination of both these aspects, when not only is information exchanged but support and help can be offered in making what can often be difficult decisions. People who have had a pregnancy terminated or have had a baby with an abnormality should have the opportunity of genetic counselling. Questions such as 'why me?', 'is the problem genetic?', 'could it happen again?', and 'are there any tests available during a future pregnancy?' are all points which can be discussed with a genetic counsellor.
The aim of genetic counselling
The aim of genetic counselling is not to make decisions for people but to enable them to have the necessary understanding of the situation so that they can decide for themselves.

47. ASBAH - Association For Spina Bifida And Hydrocephalus - Folic Acid And The Prev
spina bifida is caused by the failure of the neural tube to develop properly, Information Department , Association for spina bifida and hydrocephalus,
http://www.asbah.org/Information/Folic Acid and the Prevention of Neural Tube De
Site Search Site Search About ASBAH Contact Us Spina Bifida Hydrocephalus ... Recruitment
Folic Acid and the Prevention of Neural Tube Defects
* Vitamin Supplementation Before Pregnancy
Introduction
One of the first parts of the body to develop is the central nervous system. The neural tube, from which the spinal cord and brain develop, is formed within the first 25 days of pregnancy. Spina bifida is caused by the failure of the neural tube to develop properly, hence the term 'neural tube defects'. Related defects are anencephaly (the absence of a brain) and encephalocele (a malformation of the brain and skull).
Why does the neural tube develop incorrectly?
The causes are not yet known and are thought to be connected with both genetic and environmental factors. If a couple have had one affected child, the risk of recurrence in another pregnancy is calculated at about 1 in 35.
What has research shown?
Research on the addition of folic acid (vitamin B9) to the diet has shown conclusively that women who have had a pregnancy affected by neural tube defect can reduce their chances of having a second affected pregnancy - by a dramatic 72%. In April 1983, the Medical Research Council began a clinical trial of folic acid and other vitamin supplements in the prevention of neural tube defects.

48. © The Centre For Genetics Education
Illness Schizophrenia and Manic Depression - Genetic Aspects. Alzheimer Disease - Genetic Aspects. Neural Tube Defects - spina bifida and Anencephaly
http://www.genetics.com.au/factsheet/52.htm
Genes and Chromosomes Changes to the Genetic Code When Genes are Faulty - Mutations Genetic Conditions Genetic Counselling Autosomal Recessive Inheritance Autosomal Dominant Inheritance X-Linked Inheritance X-Inactivation Genetics and the Evironment - Multifactorial Inheritance Mitochondrial Inheritance Changes in Chromosomes - Number or Size Changes in Chromosomes - Translocations Genetic Imprinting Prenatal Testing Preimplantation Genetic Diagnosis Prevention of a Genetic Condition - Folate Before Pregnancy Newborn Screening for Genetic Disorders Genetic Testing and Screening - Medical Applications Genetic Testing and Screening - Forensic and Other Applications Ethical Issues in Human Genetics The Human Genome Project Pharmacogenetics Cloning Gene Therapy When Parents are Related - Consanguinity Trisomy 21 - Down Syndrome Trisomy 13 Trisomy 18 Klinefelter Syndrome Turner Syndrome Fragile X Syndrome Cystic Fibrosis Thalassaemia Tay-Sachs Disease Haemochromatosis Huntington Disease Haemophilia Muscular Dystrophy - Duchenne and Becker Neurofibromatosis Type I Neurofibromatosis Type II Familial Hypercholesterolaemia and Cardiovascular Disease Short Stature and Other Skeletal Dysplasias Genetics and Cancer Breast and Ovarian Cancer - Genetic Aspects Bowel Cancer - Genetic Aspects Melanoma - Genetic Aspects Cardiac Disease - Genetic Aspects Diabetes Type 1 and Type 2 - Genetic Aspects Mental Illness - Schizophrenia and Manic Depression - Genetic Aspects Alzheimer Disease - Genetic Aspects Neural Tube Defects - Spina Bifida and Anencephaly

49. OTdirect Occupational Therapy Revision Notes: Spina Bifida
hydrocephalus is more often associated with this type of spina bifida. There seem to be both genetic and environmental factors.
http://www.otdirect.co.uk/bifida.html
Occupational Therapy Revision Notes:
Spina Bifida
Please note: This is a basic revision aid, not a comprehensive and reliable statement of medical fact. These notes should not be used to guide treatment. For reliable information and advice, consult a qualified practitioner. Images on this page are used courtesy of the Association for Spina Bifida and Hydrocephalus (ASBAH)
Introduction
Spina Bifida is an umbrella term that covers three conditions of varying severity: Spina Bifida Occulta, Spina Bifida Cystica Menigocele and Spina Bifida Cystica Myelomenigocele. These are described in more detail below. Spina Bifida is a neural tube defect or spinal dysraphism a failure of normal closure of the neural tube during the development of the embryo. The other neural tube defect is anencephaly, but as this is fatal before or very shortly after birth, it has little relevance for occupational therapy.
Types of Spina Bifida
  • Spina Bifida Occulta , where there is only a minor deficiency of the posterior part of the vertebrae and no damage to the meninges or spinal cord. It presents no symptoms or difficulties in the vast majority of cases, though in some cases the spinal cord may become tethered against the vertebrae, with possible impairment of mobility or bladder control. This is often treated with corrective surgery. Often the only sign of spina bifida occulta is hair or a dimple at the site of the lesion. Many people live their lives unaware that they have the condition. Spina Bifida Cystica has two forms, both of which involve a blister-like sac on the back, where the meninges, or meninges and spinal cord, have ballooned out through the gap in the vertebrae:

50. Spina Bifida Association Spina Bifida Association Of America
IFHSB International Foundation of hydrocephalus and spina bifida The International Federation for spina bifida and hydrocephalus (IF) is the world-wide
http://www.sbaa.org/site/PageServer?pagename=sbaa_links

51. Spina Bifida - Lucile Packard Children's Hospital
spina bifida, also called myelodysplasia, is a condition in which there is A majority of babies with myelomeningocele will also have hydrocephalus,
http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/neuro/spibif.html
Electroencephalography (EEG) Laboratory
Motion and Gait Analysis Laboratory

Movement Disorders

Neurology
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Stanford, Lucile Packard Researchers Uncover Mystery Behind How Skull Plates Fuse
Neurological Disorders
Spina Bifida
What is spina bifida?
Spina bifida, also called myelodysplasia, is a condition in which there is abnormal development of the back bones, spinal cord, surrounding nerves, and the fluid-filled sac that surrounds the spinal cord. This neurological condition can cause a portion of the spinal cord and the surrounding structures to develop outside, instead of inside, the body. The defect can occur anywhere along the spine.
What are the types of spina bifida?
The types of spina bifida include the following:
  • spina bifida occulta - a mild form of spina bifida in which the spinal cord and the surrounding structures remain inside the body, but the back bones in the lower back area fail to form normally. There may be a hairy patch, dimple, or birthmark over the area of the defect. Other times, there may be no abnormalities in the area.
    meningocele - a moderate form of spina bifida in which a fluid-filled sac is visible outside of the back area. The sac does not contain the spinal cord or nerves.

52. Birth Defects Of The Central Nervous System.
Types of neural tube defects include spina bifida, anencephaly and Treatment options include the use of a shunt to treat hydrocephalus, if necessary.
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Birth_defects_of_

53. Spina Bifida And Hydrocephalus Association Of Canada -= Hydrocephalus =-
congenital hydrocephalus is a result of both environmental and genetic factors. 85 – 90 percent of individuals with spina bifida have hydrocephalus.
http://www.sbhac.ca/index.php?page=hydra

54. Spina Bifida
Detailed information on spina bifida, including causes, prevention, symptoms, A majority of babies with myelomeningocele will also have hydrocephalus,
http://www.healthsystem.virginia.edu/uvahealth/peds_neuro/spibif.cfm
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        Spina Bifida
        What is spina bifida?
        Spina bifida, also called myelodysplasia, is a condition in which there is abnormal development of the back bones, spinal cord, surrounding nerves, and the fluid-filled sac that surrounds the spinal cord. This neurological condition can cause a portion of the spinal cord and the surrounding structures to develop outside, instead of inside, the body. The defect can occur anywhere along the spine.
        What are the types of spina bifida?

55. Spina Bifida
Detailed information on spina bifida, including causes, types, symptoms, A majority of babies with myelomeningocele will also have hydrocephalus,
http://www.healthsystem.virginia.edu/uvahealth/peds_hrnewborn/spinbif.cfm
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      Spina Bifida
      What is spina bifida?
      Spina bifida, also called myelodysplasia, is a condition in which there is abnormal development of the back bones, spinal cord, surrounding nerves, and the fluid-filled sac that surrounds the spinal cord. This neurological condition can cause a portion of the spinal cord and the surrounding structures to develop outside, instead of inside, the body. The defect can occur anywhere along the spine.
      What are the types of spina bifida?

56. The Health Library — Genetics And Birth Defects
hydrocephalus A Guide for Patients, Families, and FriendsnetLibrary About spina BifidaManagement of Myelomeningocele Study, NICHD
http://healthlibrary.stanford.edu/resources/internet/bodysystems/genetic_nervous
Diseases and Disorders Use these links to jump directly to your topic of interest in Genetics and Birth Defects: Genetics: General Genetics Gene Therapy Genetic Counseling Genetic Testing ... Genetics of Specific Diseases Birth Defects: General Birth Defects Cardiovascular Defects Connective Tissue Disorders Craniofacial Anomalies ... S - W Nervous System Defects (Jump to: General information Brain Development Disorders Cerebral Palsy Chiari Malformation ... Neural Tube Defects General Information Neuronal Migration Disorders:NINDS Brain and Spinal Cord Defects:Merck Manual Brain Development Disorders Absence of the Septum Pellucidum Absence of the Septum Pellucidum:NINDS Anencephaly Anencephaly:NINDS Anencephaly:Lucile Packard Children's Hospital Management of a Pregnancy With an Anencephalic Baby:Anencephaly Support Foundation Cephalic Disorders Overview Cephalic Disorders Fact Sheet:NINDS Corpus Callosum Abnormalities Agenesis of the Corpus Callosum:NINDS Aicardi Syndrome:NINDS Aicardi Syndrome:Aicardi Syndrome Foundation Holoprosencephaly Holoprosencephaly:NINDS Learning About Holoprosencephaly:National Human Genome Research Institute Holoprosencephaly FAQs:Carter Centers for Brain Research, Stanford

57. Spina Bifida Fact Sheet: National Institute Of Neurological Disorders And Stroke
hydrocephalus is commonly treated by surgically implanting a shunt—a hollow tube—in Other scientists are studying genetic risk factors for spina bifida,
http://www.ninds.nih.gov/disorders/spina_bifida/detail_spina_bifida.htm
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The nation's leading supporter of biomedical research on disorders of the brain and nervous system More about Spina Bifida
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You are here: Home Disorders Spina Bifida Spina Bifida Fact Sheet
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Email this to a friend or colleague Request free mailed brochure Table of Contents (click to jump to sections) Introduction What is spina bifida? What are the different types of spina bifida? What causes spina bifida? ... Where can I get more information? Introduction th day of pregnancy. But if problems occur during this process, the result can be brain disorders called neural tube defects , including spina bifida top What is spina bifida? top What are the different types of spina bifida? There are four types of spina bifida: occulta, closed neural tube defects, meningocele, and myelomeningocele. Occulta Closed neural tube defects make up the second type of spina bifida. This form consists of a diverse group of spinal defects in which the spinal cord is marked by a malformation of fat, bone, or membranes. In some patients there are few or no symptoms; in others the malformation causes incomplete paralysis with urinary and bowel dysfunction.

58. Spina Bifida And Hydrocephalus Explained
spine image. spina bifida and hydrocephalus We know that spina bifida has both genetic and environmental causes, but do not fully understand what these
http://www.asbha.org.au/SpinaBifidaandHydrocephalusExplained.htm
Spina Bifida and Hydrocephalus Spina Bifida and Hydrocephalus Explained
Download PDF version of this article

Introduction

What causes spina bifida

Detection
...
Preventing spina bifida
Introduction
Varying effects
People are affected by spina bifida (SB) in a variety of ways, ranging from minor to severe:
  • Legs and feet Bowel and bladder Brain
One in 1,000 pregnancies are affected
The risk of spina bifida is approximately one in every 1,000 pregnancies. It is caused by a combination of genetic and environmental factors, which are not yet fully understood. Inadequate metabolism of folate in early pregnancy is a significant factor in the occurrence of this condition. The number of babies born with spina bifida has dropped dramatically in recent years, due to improved ultrasounds and other tests, which detect the condition and provide the choice of pregnancy termination. There is no cure. However, the vitamin folate can prevent up to 70 per cent of spina bifida cases, if taken by the mother one month before conception and during the first three months of pregnancy.
Top
What causes spina bifida
The brain and spinal cord of a foetus develop during the first 28 days of pregnancy. For reasons not yet fully understood, something sometimes goes wrong and spina bifida develops.

59. Fact Sheet: Spina Bifida Occulta
spina bifida occulta is common. Two studies undertaken in Great Britain in the Copyright © The Australian spina bifida and hydrocephalus Association.
http://www.asbha.org.au/Occulta.htm
Fact Sheet: Spina Bifida Occulta Spina bifida occulta is common. Two studies undertaken in Great Britain in the mid 1980s suggest that 22% or 23% of people have spina bifida occulta. Even though there is a very slightly increased chance of a slipped disc, very few people with spina bifida occulta will ever have any problems because of it. If a person has no symptoms from spina bifida occulta as a child, then it is unlikely that they will have any as an adult. Most people will not even be aware that they have spina bifida occulta unless it shows up on an X-ray which they have for some unrelated reason. It is usually just a small part of one vertebra low in the back which is missing. See the diagrams below that show cross sections of one vertebra.
Image of normal spine
Image of spine with spina bifia occulta However, for some people (about 2% of those who have spina bifida occulta) there can be other problems. These problems arise because there are other things involved around the area where the vertebra has not formed properly. For this small percentage of people the problem with the spine can also be more extensive than just a small piece of missing bone. More than one vertebra can be involved and these vertebrae may be malformed.

60. Northwestern Programs Aims At Revealing Genetic Causes Of Spina Bifida
However, genetic factors that predispose to spina bifida have still not been complications of spina bifida, such as infection and hydrocephalus or
http://www.sciencedaily.com/releases/2000/10/001023204122.htm
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Northwestern Programs Aims At Revealing Genetic Causes Of Spina Bifida
CHICAGO - Johnny Doe (not his real name) is a little boy who is helping unravel a mystery for scientists at Northwestern University Medical School and Duke University. Related News Stories Healthy Eating Reduces The Chance Of Spina Bifida (October 14, 2004) According to Dutch researcher Pascal Groenen, a balanced diet reduces the risk of a baby with spina bifida. He investigated how different nutritional components affected the risk of developing this ... full story Fetal Surgery For Spina Bifida Still Under Investigation At VUMC (November 23, 1998) Daniel Meyer, the first child to ever receive open fetal surgery for spina bifida, is now one and a half years old. Daniel, who was born June 12, 1997 to Cory and Scott Meyer of Nashville, still ... full story Fetal Surgery For Spina Bifida Shows Early Benefits In Leg Function, Fewer Shunts

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