Orthopedic Impairments

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AASEP's Comprehensive Overview of Orthopedic Impairment

Click Here to go to AASEP's comprehensive overview of Orthopedic Impairments. For numerous other links related to this topic, refer to the variety of topics below. 

Bone Diseases

  • Fibrous Dysplasia - Fibrous dysplasia is a chronic disorder of the skeleton that causes expansion of one or more bones due to abnormal development of the fibrous, or connective, tissue within the bone. The abnormality will cause uneven growth, brittleness and deformity in affected bones. Some patients have only one bone affected (monostotic), whereas other patients have numerous bones affected (polyostotic).
  • Osteoporosis - Osteoporosis, or porous bone, is a disease characterized by low bone mass and structural deterioration of bone tissue, leading to bone fragility and an increased susceptibility to fractures of the hip, spine, and wrist. Men as well as women suffer from osteoporosis, a disease that can be prevented and treated.
  • Paget's Disease of Bone - Paget's disease is a chronic disorder that typically results in enlarged and deformed bones. The excessive breakdown and formation of bone tissue that occurs with Paget's disease can cause bone to weaken, resulting in bone pain, arthritis, deformities, and fractures. Paget's disease may be caused by a "slow virus" infection, present for many years before symptoms appear. There is also a hereditary factor since the disease may appear in more than one family member.
  • Osteogenesis Imperfecta - Osteogenesis imperfecta (OI) is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. There are at least four recognized forms of the disorder, representing extreme variation in severity from one individual to another. For example, a person may have just a few or as many as several hundred fractures in a lifetime.
  • Hearing Loss and Bone Disorders - For people with metabolic bone disorders such as Paget's disease of bone or osteogenesis imperfecta, hearing loss is an often overlooked yet serious handicap. To understand the nature of hearing loss in individuals with metabolic bone disorders, it is important to first understand the basic mechanism of hearing.
  • Hypophosphatasia - Hypophosphatasia is one of several disorders that resembles osteogenesis imperfecta. It is an inherited metabolic (chemical) bone disease that results from low levels of an enzyme called alkaline phosphatase (ALP). Enzymes are proteins that break down other chemicals in the body so the body can use them. ALP is normally present in large amounts in bones and the liver. In hypophosphatasia, abnormalities in the gene that makes ALP lead to the production of inactive ALP.
  • Myeloma Bone Disease - Myeloma means, literally, a "tumor composed of cells normally found in bone marrow." The majority of patients with myeloma develop destructive bone lesions, also known as osteolytic bone lesions. These lesions occur primarily in the vertebrae, the ribs, the pelvis, and the skull. They occur in the red bone marrow where nests of myeloma cells accumulate. Myeloma cells do not have a direct effect on the skeleton; rather, they cause bone destruction by producing signals that activate normal osteoclasts to resorb bone.
  • Osteopetrosis - Osteopetrosis is a congenital condition present at birth in which the bones are overly dense. This results from an imbalance between the formation of bone and the breakdown of bone, both of which are necessary in the development and maintenance of normal bone. In osteopetrosis, the cells that break down bone, or the osteoclasts, usually are either fewer in number or are ineffective in breaking down bone.
  • Primary Hyperparathyroidism - Primary hyperparathyroidism is a hormonal problem due to one or more parathyroid glands producing too much parathyroid hormone. Parathyroid glands, four small glands located in the neck near the thyroid gland, keep blood calcium from falling below normal. Rarely, there are more than four of these glands, and they may be in other parts of the neck or in the chest.
  • Bibliographies - NIH ORBD~NRC bibliographies have been developed on a variety of topics. The information in these NIH ORBD~NRC bibliographies was compiled from MEDLINE, one of the National Library of Medicine’s MEDLARS databases.
  • Bone Links - ther resources that provide information about osteoporosis, Paget's disease, osteogenesis imperfecta, and related metabolic bones diseases are listed here.
  • Bones, Muscles and Joints-The musculoskeletal system - Every time you walk your child to school, settle into a chair for a good-night story, or wrap your arms around your child in a hug, you're using your bones, muscles, and joints. Without these important body parts, you and your child wouldn't be able to stand, walk, run, or even sit.
  • Bone Markers - Throughout your lifetime, old bone is constantly being removed (resorption) and replaced by new bone (formation). During early childhood and in the teenage years, new bone is added faster than old bone is removed. As a result, bones become larger, heavier, and denser. Bone formation happens faster than bone resorption until you reach your peak bone mass (maximum bone density and strength), around age 24.
  • Glossary of Orthopaedic Diagnostic Tests - Orthopaedic surgeons use a variety of diagnostic tests to help identify the specific nature of your musculoskeletal injury or condition. Orthopaedists also use results of these tests to plan an appropriate course of treatment. Here are some of the most frequently used diagnostic tests for musculoskeletal injuries and conditions.
  • Find an Orthopedist - This page allows you to search for an orthopedist by last name and optionally first name, city, state, zip code, and country. You can also search by a combination of fields.
  • Bone and joint infections - Your bones and joints, like nearly every part of your body, can fall prey to infection. Joint infections (septic or infectious arthritis) can damage cartilage and tissue within days. Bone infections, osteomyelitis (os-te-o-mi-uh-LI-tis), may fester for years and become debilitating if untreated.
  • Bone Lengthening - Limb lengthening is a surgical procedure used to treat a limb-length discrepancy (LLD) of the arm or leg. The goal is to achieve equal length with the corresponding opposite limb. LLD is the difference between the lengths of the upper arms and/or lower arms, or a difference between the lengths of the thighs and/or lower legs. In the past, surgeons rarely lengthened bones.
  • Bone Grafting - Bone grafting refers to a wide variety of surgical methods augmenting or stimulating the formation of new bone where it is needed.
  • Bone spurs - Bone spurs, also called osteophytes, are bony projections that grow along the edges of joints. The bone spurs themselves aren't painful. But they can rub against nearby nerves and bones and cause pain.
  • Klippel-Feil Syndrome - Klippel-Feil Syndrome is a rare disorder characterized by the congenital fusion of any 2 of the 7 cervical (neck) vertebrae. It is caused by a failure in the normal segmentation or division of the cervical vertebrae during the early weeks of fetal development. The most common signs of the disorder are short neck, low hairline at the back of the head, and restricted mobility of the upper spine.
  • Orthopaedic Fast Facts - 1. In 2003, musculoskeletal symptoms were the number 2 reason for physician visits. Musculoskeletal symptoms include pain, ache, soreness, discomfort, cramps, contractures, spasms, limitation of movement, stiffness, weakness, swelling, lump, mass and tumors to the musculoskeletal system...
  • McCune-Albright Syndrome - The McCune-Albright syndrome is named for the two physicians who described it over 50 years ago. They reported a group of children, most of them girls, with an unusual pattern of associated abnormalities: bone disease, with fractures, asymmetry and deformity of the legs, arms, and skull; endocrine disease, including early puberty with menstrual bleeding, development of breasts and pubic hair and an increased rate of growth; and skin changes, with areas of increased pigment distributed in an asymmetric and irregular pattern.

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Brachial Plexus/Erb's Palsy

  • Overview of Brachial Plexus Palsy - A Brachial Plexus Injury is a nerve injury. The nerves that are damaged control muscles in the shoulders, arm or hand. Any or all of these muscles may be paralyzed.
  • Information - If your newborn's arm is notably weak or completely paralyzed, your child may have Brachial Plexus Palsy (BPP), also known as Erb's Palsy or Brachial Plexus Injury (BPI). The cause of this injury is usually the stretching of one (or both) sides of the neck during a difficult delivery.
  • United Brachial Plexus Network - The United Brachial Plexus Network strives to inform, support, and unite families and those concerned with brachial plexus injuries and their prevention worldwide.
  • Birth Injuries - Better obstetric management has led to a decrease in severity of Brachial Plexus Palsy but there are still two babies affected in each 1000, born. Stretching or tearing of the brachial plexus occurs usually because of a forcep delivery, a larger than average baby, a breach birth, shoulder dystocia or prolonged labour.
  • Brachial Plexus Injury Assessment - Clinical Localizing Signs of Brachial Plexus Injuries
  • Can Shoulder Dystocia Be Prevented? - While shoulder dystocia (SD) is unanimously regarded as the “Nightmare of the Accoucheur”, it simply denotes difficult delivery of the shoulders following the delivery of the head. Fetal morbidity, in particular brachial plexus injury (BPI), was considered avoidable if SD could be prevented. Important lines of evidence that suggest that BPI is not associated with SD lead to a plausible antenatal etiology for this morbidity. Thus, avoiding SD will not avoid BPI.
  • Taking "All Fours" a Little Further (Shoulder Dystocia) - Ina May Gaskin's suggestion to get a woman into an "all fours" position when faced with suspected shoulder dystocia made a lot of sense to me. I incorporated it into my practice and it is now the first thing I try when I see one of those fat little faces creeping out over mother's perineum.
  • Anatomy - The brachial plexus can be defined as the network of nerves arising from the spine at the base of the neck, from which arise the nerves supplying the arm, forearm, hand and some parts of the shoulder girdle. The origin nerves are the anterior rami of the fifth to eighth cervical and first thoracic vertebrae.

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Cerebral Palsy

  • Overview - Cerebral palsy is an umbrella-like term used to describe a group of chronic disorders impairing control of movement that appear in the first few years of life and generally do not worsen over time. The disorders are caused by faulty development of or damage to motor areas in the brain that disrupts the brain's ability to control movement and posture.
  • Introduction - With early and ongoing treatment the effects of CP can be reduced. Many children learn how to get their bodies to work for them in other ways. For example, one infant whose CP keeps him from crawling may be able to get around by rolling from place to place.
  • Hopes through Research - In the 1860s, an English surgeon named William Little wrote the first medical descriptions of a puzzling disorder that struck children in the first years of life, causing stiff, spastic muscles in their legs and, to a lesser degree, their arms. These children had difficulty grasping objects, crawling, and walking. They did not get better as they grew up nor did they become worse. Their condition, which was called Little's disease for many years, is now known as spastic diplegia. It is just one of several disorders that affect control of movement and are grouped together under the term cerebral palsy.
  • Spasticity - Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and may interfere with movement, speech, and manner of walking. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement.
  • Types - All children with cerebral palsy have damage to the area of the brain that controls muscle tone.  As a result, they may have increased muscle tone, reduced muscle tone, or a combination of the two (fluctuating tone).  Which parts of their bodies are affected by the abnormal muscle tone depends upon where the brain damage occurs. There are three main types of cerebral palsy...
  • Statistics - Because cerebral palsy influences the way children develop, it is known as a developmental disability.  In the United States today, more people have cerebral palsy than any other developmental disability, including Down syndrome, epilepsy, and autism.
  • Definition - Cerebral palsy is a term used to describe a group of chronic conditions affecting body movements and muscle coordination.  It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development, or during infancy.
  • Glossary - Orthopaedic surgeons use a variety of diagnostic tests to help identify the specific nature of your musculoskeletal injury or condition. Orthopaedists also use results of these tests to plan an appropriate course of treatment. Here are some of the most frequently used diagnostic tests for musculoskeletal injuries and conditions.
  • Frequently Asked Questions and Answers - I am a physical education teacher and we have a five year old cp student. Are there any limitations that we should be aware of before we sit and talk with her parents? ...
  • Causes - Why does your child have cerebral palsy?  The simplest answer to this question is because your child has brain damage.  This leads naturally into the second question: Why does your child have brain damage?  There are many possible answers to this second question, because there are many reasons children can sustain brain damage.
  • History - Cerebral palsy is not a new disorder.  There have probably been children with cerebral palsy as long as there have been children.  But the medical profession did not begin to study cerebral palsy as a distinct medical condition until 1861.  In that year, an English orthopedic surgeon, Dr. William John Little, published the first paper describing the neurological problems of children with spastic diplegia.

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  • Hydrocephalus - Hydrocephalus is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as "water on the brain," the "water" is actually cerebrospinal fluid (CSF) -- a clear fluid surrounding the brain and spinal cord.
  • Normal pressure hydrocephalus - Normal pressure hydrocephalus (NPH) is an abnormal increase of cerebrospinal fluid (CSF) in the brain's ventricles, or cavities. It occurs if the normal flow of CSF throughout the brain and spinal cord is blocked in some way.
  • Overview - In hydrocephalus too much fluid builds up, causing abnormal enlargement of the cavities in the brain (ventricles) that contain CSF. Too much CSF in the ventricles can put increased pressure on the brain, potentially damaging the brain.
  • Signs and symptoms - Age, how far the disease has progressed and how well a person can tolerate increased cerebrospinal fluid pressure all affect the signs and symptoms. Babies may better tolerate increased CSF pressure because the bones of their skulls haven't completely fused together, and thus their skulls have more flexibility to handle the pressure.
  • Causes - Hydrocephalus can be present at birth (congenital hydrocephalus) or you can develop it later (acquired hydrocephalus). Hydrocephalus results when the flow of cerebrospinal fluid is disrupted or when your body doesn't absorb CSF properly.
  • Risk factors - Premature infants have an increased risk of intraventricular hemorrhage in which severe bleeding within the ventricles of the brain can lead to hydrocephalus. Other problems that can occur during pregnancy may increase an infant's risk of developing hydrocephalus, including intrauterine infection or a disorder involving incomplete closure of an infant's spinal column (myelomeningocele).
  • Screening and diagnosis - Your doctor may diagnose congenital hydrocephalus in your unborn child during a routine prenatal ultrasound, but it's often discovered during infancy or early childhood. Your doctor may suspect hydrocephalus before other signs and symptoms appear if your infant has a large head that seems to be rapidly increasing in size.
  • Complications - The severity of hydrocephalus depends on the time of onset and whether the disease is progressive. If the condition is well advanced at birth, major brain damage and physical disabilities are likely. In less severe cases, with proper treatment, it's possible to have a nearly normal life span and intelligence.
  • Infants and Children - In an infant, the most obvious sign of hydrocephalus is an abnormal enlargement of the baby's head. The soft spot (fontanel) may be tense and bulging. The scalp may appear thin and glistening, and the scalp veins may appear to have unnatural fullness (prominence), as well.
  • Prenatal Hydrocephalus - Prenatal hydrocephalus is generally not treated until after birth, when a shunt may be inserted into the baby's brain to divert CSF fluid. While some neurosurgeons have attempted in utero placement of a shunt, existing studies indicate that there are few benefits of doing so and, in fact, the potential complications outweigh the benefits.

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Muscular Dystrophy

  • Muscular Dystrophy - The muscular dystrophies (MD) are a group of genetic diseases characterized by progressive weakness and degeneration of the skeletal muscles which control movement. There are many forms of muscular dystrophy, some noticeable at birth (congenital muscular dystrophy), others in adolescence (Becker MD), but the 3 most common types are Duchenne, facioscapulohumeral, and myotonic.
  • Types - Muscular dystrophy is a group of inherited diseases that are characterized by weakness and wasting away of muscle tissue, with or without the breakdown of nerve tissue. There are nine types of muscular dystrophy, but in each type there is an eventual loss of strength, increasing disability, and possible deformity.
  • Muscular Dystrophy Association - The Muscular Dystrophy Association is a voluntary health agency — a dedicated partnership between scientists and concerned citizens aimed at conquering neuromuscular diseases that affect more than a million Americans.
  • Muscular Dystrophy Information Page - From the National Institute of Neurological Disorders and Stroke: The muscular dystrophies (MD) are a group of genetic diseases characterized by progressive weakness and degeneration of the skeletal muscles that control movement. There are many forms of muscular dystrophy, some noticeable at birth (congenital muscular dystrophy), others in adolescence (Becker MD), but the 3 most common types are Duchenne, facioscapulohumeral, and myotonic.
  • Major characteristics of the 9 types of Muscular Dystrophy - MYOTONIC dystrophy (DM), also known as Steinert's disease, is the most common adult form of muscular dystrophy. Its name underscores an unusual symptom found only in this form of dystrophy—myotonia — which is similar to a spasm or stiffening of muscles after use...
  • Creatine Kinase Test: Almost everyone with a neuromuscular disorder has had, or will have, a creatine kinase test. But what exactly is creatine kinase (CK), and why are its levels measured in neuromuscular diseases?
  • Frequently Asked Questions about the Use of Splints and Bracing (Parent Project for Muscular Dystrophy Research) - Orthotists, the people who are specially trained in making splints, have devised a system of naming splints depending on which joints they control. AFO's are ankle-foot orthoses and come from the toes or mid-foot to below the knee. These may be called ankle splints.
  • Frequently Asked Questions about Wheelchairs (Parent Project for Muscular Dystrophy Research) - Having a wheelchair for part time use for the years when walking is becoming more difficult and falls are occurring more frequently, should in no way alter the normal rate of progression of the condition. It will however ensure that he has every opportunity to be involved in as many of his friend's activities as possible, by relieving him of the extra effort of 'getting there'.
  • Muscular Dystrophy Association - The Muscular Dystrophy Association is a voluntary health agency — a dedicated partnership between scientists and concerned citizens aimed at conquering neuromuscular diseases that affect more than a million Americans.  Also available in: Spanish
  • National Institute of Arthritis and Musculoskeletal and Skin Diseases - The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases.  Also available in Spanish
  • National Institute of Neurological Disorders and Stroke - Stroke is the third leading cause of death in adults in the United States. Currently, the only approved drug treatment for acute stroke must be given within 3 hours from stroke onset. A recent study shows that a naturally occurring growth factor, called neuregulin-1, can protect nerve cells and decrease inflammation in an animal model of stroke when administered as long as 13 hours after the brain attack.
  • Parent Project for Muscular Dystrophy Research - Parent Project Muscular Dystrophy’s mission is to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy (DMD) through research, advocacy, education and compassion.
  • Muscular Dystrophy: in teenagers - MD weakens muscles over time, so children, teens, and adults who have the disease can gradually lose the ability to do the things they take for granted, like walking or sitting up. Someone with MD might start having muscle problems as a baby or their symptoms might start later. Some people even develop MD as adults.
  • Breathe Easy: Respiratory Care for Children with Muscular Dystrophy (Muscular Dystrophy Association) - The purpose of this handbook is to provide you and your child with information regarding the pulmonary (lung) aspects of muscular dystrophy (MD) and other neuromuscular diseases. It's a summary of how MD affects the lungs and the treatment and therapy techniques that are available for your child. Most of this information is specifically relevant to Duchenne muscular dystrophy and more severe forms of spinal muscular atrophy, but it may also be helpful to anyone whose breathing muscles are affected by a neuromuscular disease.
  • Everybody's Different Nobody's Perfect (Muscular Dystrophy Association) - Everybody's different.  Nobody's perfect.  Some kids can't run as fast as others can.  Even though they get where they're going, it takes them more time to get there.  Their legs are weak, and they have a hard time jumping, running, climbing stairs, or just keeping up when they are playing with other kids.  This is called muscle weakness and it's caused by a disease called muscular dystrophy...  Also available in Spanish
  • Meaning of Muscular Dystrophy (Nemours Foundation) - Muscular dystrophy (say: mus-kyoo-lur dis-troh-fee) is a disease in which the muscles of the body get weaker and weaker and slowly stop working. Muscles and membranes need many different kinds of proteins to stay healthy. When you hear the word "protein" you might think of food because food, such as meat and peanut butter, contains protein.
  • Becker Muscular Dystrophy (BMD) (Muscular Dystrophy Association) - Definition — One of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles...
  • Congenital Muscular Dystrophy (CMD) (Muscular Dystrophy Association) - Cause — Genetic mutations affecting some of the proteins necessary for muscles and sometimes for the eyes and or brain...
  • Distal Muscular Dystrophy (DD) (Muscular Dystrophy Association) - Cause — A mutation in any of at least seven genes that affect proteins necessary to the function of muscles...
  • Duchenne Muscular Dystrophy (DMD) (Also Known as Pseudohypertrophic) (Muscular Dystrophy Association) - Definition — One of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles.   Cause — An absence of dystrophin, a protein that helps keep muscle cells intact...
  • Emery-Dreifuss Muscular Dystrophy (EDMD) (Muscular Dystrophy Association) - Definition – One of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles. Cause — Mutations in the genes that produce emerin, lamin A or lamin C, proteins in the membrane that surrounds the nucleus of each muscle cell...
  • Facioscapulohumeral Muscular Dystrophy (FSH or FSHD) (Also known as Landouzy-Dejerine) (Muscular Dystrophy Association) - Definition — One of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles.  Cause — A missing piece of DNA on chromosome 4...
  • Limb-Girdle Muscular Dystrophy (LGMD) (Muscular Dystrophy Association) - Definition — One of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles.  Cause — A mutation in any of at least 15 different genes that affect proteins necessary for muscle function...
  • Myotonic Dystrophy (DM) (Also known as Steinert's Disease) (Muscular Dystrophy Association) - Definition — One of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles.  Cause — A repeated section of DNA on either chromosome 19 or chromosome 3...
  • Oculopharyngeal Muscular Dystrophy (OPMD) (Muscular Dystrophy Association) - Definition — One of nine types of muscular dystrophy, a group of genetic, degenerative diseases primarily affecting voluntary muscles.  Cause — A faulty gene for poly(A)-binding protein 1 (PABPN1), which is suspected to lead to production of extra chemical material that causes formation of clumps in the muscle cells...
  • Rare Muscular Dystrophies: Congenital, Distal, Emery-Dreifuss and Oculopharyngeal Muscular Dystrophies (Muscular Dystrophy Association)  - if you've recently found out you have a rare form of muscular dystrophy, you understand what my family went through. The rarity of Emery-Dreifuss, congenital, distal and oculopharyngeal muscular dystrophies makes it very important that you get all the information you can about your disorder. This pamphlet will help you get started.  Also available in Spanish.

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  • About Polimyelitis - Poliomyelitis, also called polio, is a highly contagious infectious disease caused by three types of poliovirus. The poliovirus is a virus most recognized for its destruction to the nervous system causing paralysis.
  • Post-polio Syndrome - Post-polio syndrome (PPS) is a condition that affects polio survivors anywhere from 10 to 40 years after recovery from an initial paralytic attack of the poliomyelitis virus. PPS is characterized by a further weakening of muscles that were previously affected by the polio infection. Symptoms include fatigue, slowly progressive muscle weakness and, at times, muscular atrophy.
  • Polio: in children - Polio is a viral illness that, in about 95% of cases, actually produces no symptoms at all (called asymptomatic polio). In the 4% to 8% of cases in which there are symptoms (called symptomatic polio), the illness appears in three forms...
  • National Institute of Neurological Disorders and Stroke - he mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world.
  • Post-Polio Health International including International Ventilator Users Network - Post-Polio Health International's mission is to enhance the lives and independence of polio survivors and home ventilator users through education, advocacy, research and networking.
  • World Health Organization - The World Health Organization is the United Nations specialized agency for health. It was established on 7 April 1948. WHO's objective, as set out in its Constitution, is the attainment by all peoples of the highest possible level of health. Health is defined in WHO's Constitution as a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.

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  • Overview with charts - Your spine has three slight curves-one in the neck, one in the upper back, and another in the lower back. These curves are normal and can be seen from a side view. From a back view, your spine should appear straight. If your spine has a side-to-side curve, the curve is called scoliosis.

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Spina Bifida

  • Spina Bifida - Spina bifida (SB) is a neural tube defect (a disorder involving incomplete development of the brain, spinal cord, and/or their protective coverings) caused by the failure of the fetus's spine to close properly during the first month of pregnancy.
  • Frequently Asked Questions - The National Resource Center has gathered the most frequently asked questions about spina bifida so you have easy access to the information you need.
  • Prevention - Spina bifida is a birth defect that can happen to anyone.  We don’t know the exact cause of spina bifida, but research has shown that if a woman takes 400 mcg of folic acid every day and before she becomes pregnant, she reduces her risk of having a baby with spina bifida or another neural tube defect by as much as 70%.
  • Living with Spina Bifida - New worlds have opened for people with spina bifida due to advancements in treatment and prevention.  Those with this challenging birth defect are living longer, more productive lives than was dreamed of just 20 years ago.
  • Educational Issues - To meet the physical, social, emotional and academic goals of children with spina bifida and hydrocephalus, specific needs must be weighed and considered through testing and evaluation, class placement, education services, social and emotional adjustment.
  • Depression and Anxiety in Individuals with Spina Bifida - it happens to everyone—feeling sad, blue or occasionally anxious.  But when it won’t go away and interferes with life it probably is time to seek medical advice.  Diagnosing depression is an important step in determining treatment and it is difficult to do in people with spina bifida.
  • Genetics & Spina Bifida - Spina bifida, the incomplete formation of the spine, is a birth defect that occurs within the first month of pregnancy, often before women know they are pregnant.  It is believed that genetic and environmental factors interact to cause spina bifida, making it possible to inherit genes susceptible to having spina bifida.  But is also something in the environment that triggers the development of spina bifida.
  • Agent Orange Benefits Act - Enacted in 1996, The Agent Orange Benefits Act, (Public Law 104-204) established benefits for Vietnam veterans’ children born with spina bifida.
  • Latex (Natural Rubber) Allergy in Spina Bifida - Research has shown that up to 73 percent of children and adolescents with spina bifida are sensitive to latex.  While the cause of the allergy is unknown, one theory is it develops because of the early, intense and constant exposure to rubber products through numerous surgeries, diagnostic examinations, and bladder and bowel programs.
  • Therapeutic Riding with Spina Bifida - Therapeutic horseback riding can be an excellent way for people with spina bifida to maintain or improve fitness and strength as well as develop levels of independence in their riding skills.
  • Spina Bifida Occulta - Supporting the skeleton and protecting the spinal cord, the spinal column is the cable of nervous tissue that transmits information between the brain and the body.  Spina bifida occulta refers to a group of conditions of the vertebrae in the spinal column.  Occurring in 10 20 percent of the population, spina bifida occulta is often found during a lower back radiogram.
  • Tethering Spinal Cord - As the second most common operation performed on children with spina bifida, 20 to 50 percent will require surgery to untether the spinal cord.  Untethering is designed primarily to prevent further deterioration, rather than to improve what has already occurred.
  • Transitions into Adolescence - while it is now estimated that 85 percent of all children with spina bifida live into adulthood, concerns regarding personal and physical barriers play greater roles for these special teens. Just as parents assist children without spina bifida with this transition, parents of children with spina bifida and the professionals who work with them can also foster independence and provide encouragement for mastering self-help skills.
  • Urologic Care and Management - Over 90 percent of children with spina bifida will be born with a normal upper urinary tract.  If not medically watched, half of the children will develop lower urinary tract hostility leading to upper urinary tract damage. However, children at risk for renal damage can be identified early and intervention undertaken to prevent long-term compromise of kidney function.

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Spinal Cord Injury

  • Spinal Cord Injury - When someone sustains a spinal cord injury (SCI), one of the most difficult issues to deal with is that there is no "cure" at the present time. One would think that, with the "explosion in scientific knowledge" we hear about almost every day, SOMEONE would be doing SOMETHING to find a cure for people with SCI.
  • Information & Resources - Any damage to the spinal cord is a very complex injury. People who are injured are often confused when trying to understand what it means to be a person with a spinal cord injury (SCI). Will I be able to move my hands? Will I walk again? What can I do? Each injury is different and can affect the body in many different ways.
  • Information on Assistive Technology - BLEDATA provides objective information on assistive technology and rehabilitation equipment available from domestic and international sources to consumers, organizations, professionals, and caregivers within the United States. We serve the nation's disability, rehabilitation, and senior communities.
  • What is Spinal Cord Injury - A spinal cord injury usually begins with a sudden, traumatic blow to the spine that fractures or dislocates vertebrae. The damage begins at the moment of injury when displaced bone fragments, disc material, or ligaments bruise or tear into spinal cord tissue. Most injuries to the spinal cord don't completely sever it. Instead, an injury is more likely to cause fractures and compression of the vertebrae, which then crush and destroy the axons, extensions of nerve cells that carry signals up and down the spinal cord between the brain and the rest of the body. An injury to the spinal cord can damage a few, many, or almost all of these axons. Some injuries will allow almost complete recovery. Others will result in complete paralysis.

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Spinal Muscular Atrophies

  • Spinal Muscular Atrophies - Spinal muscular atrophy (SMA) is a genetic, motor neuron disease caused by progressive degeneration of motor neurons in the spinal cord. The disorder causes weakness and wasting of the voluntary muscles. Weakness is often more severe in the legs than in the arms.
  • Kennedy’s Disease - Kennedy's disease is an inherited motor neuron disease that affects males. It is one of a group of disorders called spinal muscular atrophy (SMA). Onset of the disease is usually between the ages of 20 and 40, although it has been diagnosed in men from their teens to their 70s. Early symptoms include tremor of the outstretched hands, muscle cramps with exertion, and fasciculations (fleeting muscle twitches visible under the skin).

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