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Fragile X Syndrome: Families
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Fragile X Syndrome is a genetic disorder which causes a wide range of reasoning problems from mild learning disabilities to severe mental retardation. Learn how genetic researchers and families are using their hearts and minds to embrace Fragile X.
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Learn about fragile X syndrome Interest is growing in etiology-specific treatments and interventions as more syndromes are being identified with genetic markers. The advances in biological science have allowed behavioral researchers to identify phenotypes, or lists of commonly observed characteristics, for many of the genetic illnesses. Researchers are compiling data on the unique cognitive, physical, behavioral, and neurological characteristics of identified syndromes that can be useful in educational, pharmacological, and other intervention methods. Knowledge about the characteristics of FXS can be a helpful advocacy tool for parents since many professionals may not be familiar with the specific features or recommended practices for affected individuals. [Click for Resource List.]
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While there is no cure for fragile-X syndrome, many areas of intervention can improve the lives of those affected and their families. All affected people can make progress with proper education, therapy and support. A multidisciplinary approach is necessary to manage the multifaceted problems encountered. Each child should be formally assessed to establish his or her needs. Speech therapists, behavioural therapists, special educators and paediatricians are all likely to be involved.
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Fragile X is inherited. Carrier men (transmitting males) pass the premutation to all their daughters but none of their sons. Each child of a carrier woman has a 50% chance of inheriting the gene. The Fragile X premutation can be passed silently down through generations in a family before a child is affected by the syndrome. A DNA blood test identifies both carriers and affected individuals. While the exact prevalence of Fragile X is unknown, recent studies indicate the statistics below:
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The facts about Fragile X are complicated, and parents and family members are invited to ask their doctor to refer them to a genetics clinic. The genetics clinic can provide diagnostic and counselling services, including information about reproductive options. Clinics are held in Victoria in metropolitan Melbourne, Geelong, Ballarat, Bendigo, Albury/Wodonga, Mildura, Shepparton, Warragul, Warrnambool, Frankston and Sale/Traralgon. Contact Genetic Health Services Victoria on the number below for more information about Fragile X syndrome or to organise an appointment.
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Since its inception in 1984, The National Fragile X Foundation has sought to be a comprehensive information and support resource for everyone in the Fragile X community, including individuals with Fragile X, their families, and the professionals who work with them. In recent years, the foundation has greatly increased its efforts to promote both legislative advocacy and research funding. The research component will become stronger again as the merger with CFXF takes effect.
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