Fragile+X+Syndrome



"Fragile X syndrome (FXS) is a genetic condition that causes intellectual disability, behavioral and learning challenges and various physical characteristics. Though FXS occurs in both genders, males are more frequently affected than females, and generally with greater severity." Taken from the website for the [|National Fragile X Foundation]
 * Definition:**

"Fragile X syndrome is caused by a change in a gene called FMR1. A small part of the gene code is repeated on a fragile area of the X chromosome. The more repeats, the more likely there is to be a problem The FMR1 gene makes a protein needed for your brain to grow properly. A defect in the gene makes your body produce too little of the protein, or none at all.  Boys and girls can both be affected, but because boys have only one X chromosome, a single fragile X is likely to affect them more severely. You can have fragile X syndrome even if your parents do not have it. A family history of fragile X syndrome, developmental problems, or intellectual disability may not be present." Taken from [|PubMed Health website]
 * Overview:**

Behavior problems associated with fragile X syndrome include: Physical signs may include: Some of these problems are present at birth, while others may not develop until after puberty.
 * Symptoms:**
 * Delay in crawling, walking, or twisting
 * Hand clapping or hand biting
 * Hyperactive or impulsive behavior [[image:https://www.ourfragilexworld.org/Portals/0/images/Adam_Soper.jpg width="274" height="385" align="right"]]
 * Mental retardation
 * [|Speech and language delay]
 * Tendency to avoid eye contact
 * Flat feet
 * Flexible joints and low muscle tone
 * Large body size
 * Large forehead or ears with a prominent jaw
 * Long face
 * Soft skin

__ RESOURCES __

The Fragile X Files This blog is created by a mother of three children who have Fragile X. She shares her experiences and thoughts, as well as information about fragile X. Love and Survival with Fragile X This blog was created by a mother of a child with Fragile X. She shares her experiences, thoughts, emotions, and her journey of having a child with Fragile X syndrome. Fragile X Awareness This blog was created to give information about Fragile X, share other blog of people who have or have a child with Fragile X. It is created to bring awareness about Fragile X syndrome.
 * Blogs**

Fragile x Foundation Website This is the National foundation website. It will give you information and resources about Fragile X Syndrome. Center for Disease Control and Prevention This is a website that will give you information about the syndrome, statistcs, and more information. Fragile X Research Foundation This website gives you information about Fragile X and the research that has been done regarding Fragile X and finding a cure. [|Welcome to Holland] This was written in 1987 by a mother of a child with a disability as a description of what it is like to have a child with a disability. This is not specifically related to Fragile X Syndrome but is a nice description of what life is like with a children that has special needs.
 * Websites**
 * PubMed Health This site provides and overview of what Fragile X Syndrome is.

[|Fragile X Syndrome] This is an article from the European Journal of Human Genetics and provides an overview of the syndrome. Fragile X Syndrome This is a excerpt from a book about diagnosing and testing for Fragile x Syndrome Autism is Associated with Fragile x Syndrome This is an article from the Journal of Autism and Developmental Disorders and discusses the relation of Fragile x Syndrome and Autism. Understanding the Molecular Basis of Fragile X Syndrome This journal article comes from the Oxford Journal for human molecular genetics and it discusses the genetic aspect of Fragile X Syndrome. Preventative screening for Fragile X Syndrome This journal article talks about preventative measures to screen for the possibility for Fragile X Syndrome. It comes from the American Psychological Association.
 * Journal Articles**

Medical News Today This article discusses a study that shows that people with Fragile x Syndrome are likely to have other symptoms as well. UCSF Medical Center This article discusses carrier testing and how to find out if your a carrier and what exactly that means.
 * Magazine Articles**
 * Good Housekeeping** This is a magazine article about a story of a family and their plan and emotions about having a child with Fragile X and their plan for taking care of them in the future.
 * Discover Magazine** This article discusses some of the history of Fragile X and then discusses a story of a boy named Jason and his journey of being wrongly diagnosed with ADHD, but then correctly diagnosed with Fragile X.
 * Forbes Magazine** This article discusses the research from MIT who is trying to see if prescription drugs that are already available can help treat some forms of autism and mental retardation, including Fragile X.
 * Time Magazine** This article discusses the story of a family that is affected by Fragile X, along with information and statistics about fragile x and how it related to this family.


 * Books**
 * Understanding Fragile X Syndrome "**This handbook offers a straightforward introduction that clearly explains the condition on both a scientific and practical level. With sections on diagnosis, symptoms and treatment, as well as discussions of various emotional and behavioral considerations, the book covers all aspects Fragile X syndrome, its implications, and the possibilities open to families affected by it. The book demonstrates how with the right therapies progress can be made and emphasizes how music can be used effectively to promote communication, interaction, fine motor skills and responsiveness in children with the condition. This is an essential reference tool for families of individuals with Fragile X syndrome, as well as therapists and healthcare professionals who are unfamiliar with the condition and looking to find out more." Taken from Amazon.com
 * Fragile X Fragile Hope** "Elizabeth Griffin's son Zack has fragile X syndrome-the most common known cause of inherited mental impairment-and is among the 20 percent of people with fragile X who have autism. Whether you are a parent of a child with special needs or you struggle with unresolved grief, chronic stress, or depression, "Fragile X, Fragile Hope" shows without a doubt that you can survive, and more than survive, you can find your way back to a joy-filled life." Taken from Amazon.com.
 * Children with Fragile X Syndrome** "Fragile X syndrome is believed to be the most common genetic cause of mental retardation, even more common than Down syndrome. It can result in a wide range of developmental delays, learning disabilities, and physical characteristics -- which all tend to be more pronounced in boys than in girls. At last, there is a comprehensive book on fragile X syndrome for parents. The first and only book of its kind, this book provides a complete, sensitive introduction to fragile X syndrome, an inherited, genetic condition caused by a mutation on the X-chromosome. This new guide is written by an experienced, caring group of parents, doctors, therapists, and teachers, who offer an in depth look at the issues and concerns affecting children and their families." Taken from Amazon.com
 * Fragile X Syndrome: A Guide for Teachers** "Fragile X Syndrome is thought to be the most common inherited cause of learning difficulties. However many people have never heard of it and those who have, including many of the professionals who work with those affected by it, have little knowledge or understanding of the condition. This book brings up to date research with information and advice from teachers who are discovering, first hand, the best ways of educating children with Fragile X. It is much needed support and advice that will help teachers to understand the child with Fragile X and encourage maximum educational progress. / While the book is aimed at teachers, it is also an excellent resource for parents, therapists and any professional working with a child who has Fragile X." Taken from Amazon.com

media type="youtube" key="wGdH1M5lCVY?version=3" height="315" width="420" This video, above, shows the many faces of fragile X. It looks at a number of children with fragile X and examines their characteristics and their development. media type="youtube" key="Smg72gw23iU?version=3" height="315" width="420" This video, above, is a news clip about a 15 year old boy and his family. It discusses what Fragile X is and talks about the family, their journey and the young boy.
 * Videos**

media type="youtube" key="9_PEW6ocSNs" height="315" width="560" This video is a short animation of what is behind Fragile X Syndrome.

media type="youtube" key="_byqoPW_XFk" height="315" width="420" This video is a short trailer for a documentary about children and families living with Fragile X.