S.O.F.T. Support for Trisomy 18, 13 and other Related Disorders S.O.F.T. is a nonprofit volunteer organization offering support for parents who have had a child with a chromesome disorder, and education to familes and professionals interested in the care of these children
Trisomy 13 Facts Trisomy 13 Syndrome is a genetic disorder with onset before birth. It occurs approximately 1/5000 live births. Infants affected with Trisomy 13 tend to be small at birth.
Trisomy 18 Syndrome Facts Trisomy 18 Syndrome is a genetic disorder with onset before birth. Paternal and Maternal age are usually above average. Babies appear thin and frail. They fail to thrive and have difficulty feeding.
About Early-Onset Bipolar Disorder Bipolar disorder (also known as manic-depression) is a serious but treatable medical illness. It is a disorder of the brain marked by extreme changes in mood, energy, and behavior. Symptoms may be present since infancy or early childhood, or may suddenly emerge in adolescence or adulthood. Until recently, a diagnosis of the disorder was rarely made in childhood. Doctors can now recognize and treat bipolar disorder in young children.
AlopeciaKIDS.org AlopeciaKIDS.org - where kids with alopecia and their families help other alopeciaKIDS and their families by sharing experiences, making new friends, learning, growing and discovering themselves.
Angelman Syndrome Homepage Angelman Syndrome is a rare genetic disorder caused by a small mutation or deletion in chromosome 15. Some of the characteristics of AS are ...Absent speech, seizures, frequent laughter, flapping of arms and developmental delays. Angelman Syndrome is widley misdiagnosed as Cerebal Palsy or Autism.
Anthrax General Information Answers to commonly asked questions about this deadly disease from the Centers for Disease Control and Prevention.
Apert Syndrome 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.
Archives of Disease in Childhood Archives of Disease in Childhood focuses on all aspects of child health and disease from the perinatal period (in the Fetal and Neonatal edition) through to adolescence.
Autism FAQ - Similar Conditions There are a number of diseases which cause children to display some of the symptoms of autism. Also, on occasion, brain injury has caused people to display some of the symptoms of autism
Barth Syndrome Foundation, Inc. A comprehensive site to learn about this rare, underdiagnosed genetic disorder, affecting the heart, growth, ability to create neutrophils, and muscle weakness in boys.
Birth Defect Fact Sheets BDRC has spent hundreds of hours researching, writing, editing and reviewing information to produce comprehensive birth defect fact sheets on the most commonly reported birth defects.
Brain Surgery The purpose of this Website is NOT to make you into a Brain Surgeon; rather, it is to give you useable, non-technical information about the conditions which require surgery in this most important area of our body.
CancerWise CancerWise is a monthly electronic publication that contains information about the latest advancements in cancer treatment and research, support programs and activities, and cancer prevention tips, among other cancer news and information.
Charcot-Marie-Tooth Disorder Charcot-Marie-Tooth, or CMT, is the most common inherited neurological disorder, affecting approximately 150,000 Americans. CMT is found world-wide in all races and ethnic groups. It was discovered in 1886 by three physicians, Jean-Marie-Charcot, Pierre Marie, and Howard Henry Tooth.
CHARGE Syndrome CHARGE syndrome (also known as CHARGE association) involves a specific set of birth defects that occur in early fetal development,
CHARGE SYNDROME FOUNDATION CHARGE Syndrome - Choanal Atresia, Posterior Coloboma, Heart defect, choanal Atresia, Retardation, Genital and Ear anomalies. Many resources for families.
Child & Adolescent Bipolar Foundation Learning about bipolar disorder is an important first step on the path to understanding the medical and emotional needs of a child with the illness.
ChildBuilders.Org ChildBuilders is a non-profit organization that has brought education and assistance to Houston families since 1974. Our programs teach parents and children important skills to help them lead healthier lives. Parents learn how to raise emotionally healthy children. And children learn skills they will need to be good parents. ChildBuilders is governed by a Board of Directors and has an Advisory Board of 47 outstanding citizens
Children With Leukemia Each reader of this web site can make a difference in the life of a child diagnosed with leukemia. We ask, having known the suffering that our own child endured, that you spread the word concerning this web site.
Children's Apraxia Network Children's Apraxia Network is a Non-Profit Organization, a partnership of families and professionals working together to provide support and information for those who care for children with apraxia.
Chronic Care Center Chronic Care Center - specializing in the treatment and follow-up of childhood chronic diseases, including thalassemia and insulin dependent diabetes.
CMT-Charot-Marie-Tooth Disorder CMTnet is a repository of information for research and treatment of Charcot-Marie-Tooth (CMT). CMT is a hereditary progressive neuromuscular disorder that primarily effects the feet, legs and hands. CMTnet is intended to provide information for both the medical and non-medical communities.
Diastrophic Help The purpose of this web site is to help the parents of children with diastrophic dysplasia (DDs for short) solve the very early questions of self-care and adjustments to the home and school environments.
Diphtheria in the Child Care Setting Diphtheria is a disease caused by a bacteria, Corynebacterium diphtheriae, which invades the throat. Diphtheria is usually spread through the airborne route or through contact with saliva or nasal secretions of an infected person. Up-to-date vaccination with the DTP (diphtheria is the “D”) vaccine can prevent this very serious, life-threatening disease.
Disorder Zone Archives Welcome to the Child's Disorder Zone Archives. As we feature various disorders, they will be archived into this collection.
Dwarfism resources This site serves as a resource for those affected with dwarfism and their families.
Dyslexia Testing The early diagnosis of dyslexia is emphasized by most specialists in the field. Once a child is diagnosed as being at risk, the correct remedial teaching can be started so that the child avoids the experiences of failure that are so common among dyslexic children.
Dyspraxia Foundation We are a UK charity which exists to help people to understand and cope with dyspraxia. We are a resource for parents, for teenagers and adults who have the condition, and for professionals who help all of them.
Early-Onset Bipolar Disorder — Ways to Tell Bipolar disorder looks different in children than it does in adults. Children with bipolar disorder usually have an ongoing, continuous mood disturbance that is a mix of mania and depression. This rapid and severe cycling between moods produces chronic irritability and few clear periods of wellness between episodes.
eHow to Avoid an Episiotomy Performing some simple exercises can prepare your perineum for the crowning and delivery of your child and lessen your chances of having an unnecessary episiotomy
Essential Tremor Foundation The International Essential Tremor Foundation (IETF) was created to provide information, services and support to individuals and families affected by essential tremor (ET). The organization encourages and promotes research in an effort to determine the causes, treatment and ultimately the cure for ET.
Fighting Krabbe's Disease with Jim Kelly Krabbes Disease is a genetic disease passed on by both mother and father. It is not determined by gender. Any child conceived by carrier parents has a 1 in 4 chance of being affected; a 1in 4 chance of being a non-carrier; and a 2 in 4 chance of being a carrier. Being a carrier does not affect the child's functioning and can only be detected through genetic testing of the DNA code. The disease itself is an error in the genes that does not allow for proper nerve development in the brain.
I Did It Project Kids have share their experience with medical procedures, tests or illness with other kids. All topics from asthma, to cancer, to x-rays are covered. Kids can read about what happened to others and share their own feelings and thoughts. There is also an opportunity to participate in a book project.
Legs For Life Legs For Life® is a national screening program for peripheral vascular disease (PVD) dedicated to improving the cardiovascular health of the community.
Malaria Malaria is re-emerging as World's Number One killer infection. Once nearly-eradicated, the disease now affects more than 300 million and kills more than 3 million people every year.
Malaria in Children Most of the 1-3 million who die each year from malaria are children, mainly in Africa, which is hyperendemic for malaria. In older children, malaria has a similar course as in adults. However, in children below the age of 5 years, particularly infants, the disease tends to be atypical and more severe.
Multiple Personality Disorder: Child Abuse Survivor If you have multiple personality disorder or dissociative identity disorders... if you know a person with mpd... or DID... If you are a person who enjoys good art... or if you are curious about M.P.D. and D.I.D... if you are a survivor of child abuse... if you are a mental health professional working with trauma and abuse survivors... if you are in therapy... or if you need to be in therapy... if you just have a big heart (Did I say "just"?!?)... then this is the place for you!
Multiplicity, Abuse & Healing The purpose of this site is to provide resources to explore and learn about the main issues involved in Multiple Personality Disorder/Dissociative Identity Disorder MPD/DID.
National Institute of Neurological Disorders The NINDS, an agency of the U.S. Federal Government and a component of the National Institutes of Health and the U.S. Public Health Service, is a lead agency for the Congressionally designated Decade of the Brain, and the leading supporter of biomedical research on disorders of the brain and nervous system.
National MPS Society Information about children with Mucopolysaccharidosis or Mucolipidosis. These are storage Disorders.
Obsessive-Compulsive Disorder Obsessions consist of repetitive unwanted or bothersome thoughts. Compulsive and Ritualistic Behaviors are when the person feels that something must be done over and over and/or in a certain way. Research shows 50 to 60% of persons with TS also have Obsessive-Compulsive Disorder (OCD).
Ontario Brain Injury Association O.B.I.A. is a charity dedicated to preventing traumatic brain injuries and to improving the quality of life for survivors of acquired brain injury, their families and the community with which they interact.
Polio in the Child Care Setting Polio is caused by the poliovirus. It gains entry to the body by fecal-oral spread and can infect the intestinal tract. It can be excreted and may be spread through the feces. Polio attacks the nervous system and can cause paralysis in legs or other parts of the body. Polio is still common in other parts of the world where many people remain unvaccinated.
Preemie Mom's Page This site contains information on prematurely born children, cerebral palsy, vision impairments, the Early Intervetion Program, Special Education, siblings, supporting special families, and more.
Pull-Through Network The Pull-Through Network is a non-profit national support and information network for families of children born with anorectal malformations and their associated defects, or who have had a pull-thru surgery for any reason.
Reasons for Referral for a Genetics Evaluation While there are no screening guidelines you can use to detect all genetic disorders, the following is a list of some of the reasons for referral. If you are working with a family and are not sure whether a referral is appropriate, call the genetics center in your area.
Rett Syndrome Rett syndrome (RS) is a progressive neurodevelopmental disorder that occurs almost exclusively in females.
Sanfilippo Syndrome Sanfilippo syndrome is a rare genetic disorder characterized by mental deterioration, mild physical defects, and behavioral problems. Sanfilippo syndrome, also considered a genetic error of metabolism, is a mucopolysaccharide disorder and is referred to as MPS - III
Second Hand Smoke and Kids Second-hand smoke (which is sometimes called environmental tobacco smoke or ETS) contains toxic substances, over 40 of which cause cancer. Some of these substances are in stronger concentrations in second-hand smoke than
Sensory Integration Dysfunction Information, links and resources regarding SID. Sensory Integration Dysfunction is the inability of the brain to correctly process information brought in by the senses. Sensory Integration Dysfunction (SID/DSI) or sensory processing deficits can come in many different forms.
Sereena Celeste Beech Williams Syndrome Site This site is to share our experience of williams syndrome and how it has affected our daughter Sereena. We aim to give help and info to others in a similar situation.
Silence Isn't Always Golden The National Institute on Deafness and Other Communication Disorders (NIDCD) is one of the Institutes that comprise the National Institutes of Health (NIH). NIH is the Federal government's focal point for the support of biomedical research. NIH's mission is to uncover new knowledge that will lead to better health for everyone. Simply described, the goal of NIH research is to acquire new knowledge to help prevent, detect, diagnose, and treat disease and disability.
Teeter's Page on Aperts Syndrome Aperts Syndrome is a genetic defect and falls under the broad classification of craniofacial/limb anomalies. Teeter is a little girl with Aperts Syndrome. Many resources and family stories.
Teratogens-Clinical Genetics: Teratogens, agents that cause fetal injury with exposure during pregnancy, are found at home or the workplace. The effect is related to type of agent, dose and duration and time of exposure. The first half of pregnancy is the most vulnerable. Public awareness is essential for prevention.
The Bipolar Child-Live Audio As many as a third of children diagnosed with ADD, attention-deficit disorder, are tragically misdiagnosed. Their tantrums, mood swings, and inability to pay attention are signs of a major mental illness called manic-depressive illness, or bipolar disorder. Learn more about the implications of these misdiagnoses, and how bipolar disorder affects children and their families in this hour of The Infinite Mind.
The Facts About Tourette Syndrome The original, although not official, Tourette Syndrome web site.Tourette Syndrome (TS) is a neurological disorder characterized by tics -- involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way.
Tourette Syndrome Tourette syndrome (TS) is an inherited neurological disorder characterized by sudden, involuntary, repetitive muscle movements (motor tics) and vocalizations (vocal tics). The disorder is also known as Gilles de la Tourette syndrome for the neurologist who described the syndrome in 1885.
Toxic Shock Toxic shock syndrome (TSS) is a type of blood poisoning that will make you feel severely ill very quickly. TSS is a rare but potentially serious illness that can develop quickly in anyone – men, women and children.
Triple X Syndrome Triple X Syndrome - Information and support for parents with daughters having 47,XXX, triple X or Trisomy X syndrome.
What Is OCD? If you or someone you care about has been diagnosed with Obsessive-Compulsive Disorder (OCD), you may feel you are the only person facing the difficulties of this illness. But you are not alone. In the United States, 1 in 50 adults currently has OCD, and twice that many have had it at some point in their lives
What is Sotos Syndrome? Sotos Syndrome is a rare genetic disorder characterized by excessive growth that occurs prior to and after birth. At birth, affected infants have unusually increased body length that is abnormal in proportion to weight, which may also be above average; in addition, newborns typically demonstrate advanced bone growth, abnormally large hands and/or feet, and characteristic facial features.
Williams Syndrome Williams syndrome (WS), which was first described in 1961, is a rare genetic disorder that causes medical and developmental problems. It is not a familial condition (it does not run in families) and is not a result of medical, environmental, or psychosocial factors; it is a random happening and the risk of parents having another child with WS is no greater than the original risk.
Wilson Disease Wilson disease, also known as hepatolenticular degeneration, is a rare inherited systemic disorder of copper metabolism. In patients with this disease, copper initially accumulates in the liver. When the liver's storage capacity is eventually exceeded, copper is then released from the liver and begins to collect in other organs of the body, particularly the brain, eyes, and kidneys.
Word Finding Difficulties The purpose of this Word Finding Web site is to provide information about Word Finding for professionals, parents, and learners with word finding difficulties.
Alopecia Kids Welcome to alopeciaKIDS.org - where kids with alopecia and their families help other alopeciaKIDS and their families by sharing experiences, making new friends, learning, growing and discovering themselves.
Anxiety Symptoms One out of five americans is suffering from anxiety symptoms. This websites dills with the most common anxiety disorders, their symptoms and the available treatments
Core Family Resources Core resources for parents of special needs children. Includes national and international organizations as well as personal sites. Including adoptions, child protection and advocacy. Plus cool kids sites.
L'il Aussie Prems An Australian support site for parents & families of premature babies.You will find useful links to all things for premature babies including clothing stores, support sites, birth stories, galleries, personal blogs, journeys through the NICU & much more.
Moebius Syndrome/Facial Paralysis Information and Support for families touched by Moebius Syndrome or any type of Facial Paralysis. Poland's Syndrome, epilepsy, ADD, Apergers, Autism and many rare facial paralysis syndrome links are also included on the site.
ButYouDontLookSick.com -------------------------------------------------------------------------------- Welcome to ButYouDontLookSick.com. .This website is about living life to the fullest with any invisible disease. This website was designed to put a personal "real-life" face on the disease instead of a stuffy medical journal entry. Combining humor with essential information, Christine Miserandino has put together an easy to read collection of stories, book reviews, product reviews, resources, a message board and answers to the endless questions of: But you don't look sick?
