Since 2007, over 1,700 families have taken part in Our Fragile X World projects. They have given important information about how fragile X affects their lives. The reports below summarize key findings from these projects.
FIRST NATIONAL FRAGILE X SURVEY SUMMARY REPORTS
Overview of the National Fragile X Survey
This report provides an overview of the National Fragile X Survey. The overview talks about why and how the survey was done. It also describes the families and children who took part in the survey and what was learned during the 3-year project.
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Getting the Diagnosis of Fragile X Syndrome
This report describes how families find out their child has fragile X syndrome. We found that when families first express concerns about their child, they are often told to "wait and see" if their child’s language or behavior gets better. It often takes between three and five visits to a specialist before a child is tested for fragile X syndrome. As a result, the average age of diagnosis had stayed the same over the previous 7 years (2001-2007).
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Conditions Associated with Fragile X Syndrome
This report gives information on nine conditions that are common in people with fragile X syndrome. These conditions include
- developmental delays (problems learning developmental skills, such as walking, talking, and playing with others)
- attention problems
- hyperactivity (higher than normal level of activity)
- self-harm or self-injury
- autism (disorders that make it hard to communicate and form relationships)
- seizures (fits of uncontrolled movement)
Overall, males with fragile X had the highest levels of these conditions. Females with fragile X also had these conditions but to a lesser extent. These results show the need for doctors and other care providers to track signs of these conditions and treat them as soon as they can.
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Daily Living Skills of Individuals with Fragile X Syndrome
This report gives information about the daily living skills of people with fragile X syndrome. These skills include eating, dressing, using the toilet, bathing, communicating, speaking, and reading. We report results across five age groups: birth to 5 years, 6 to 10 years, 11 to 15 years, 16 to 20 years, and over 20 years. Most adults had mastered many skills on their own. However, some of their skills were not as well developed. These were skills such as using complex sentences, reading, or speaking at a normal volume. As expected, differences were found between males and females.
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