Fragile X Syndrome (cont.)
In this Article
How many people are affected by Fragile X syndrome?
Currently, researchers don't know exactly how many people have either the full mutation or the premutation form of the FMR1 gene. Even though researchers can estimate the number of people affected by Fragile X, these estimates can be very different.*
A summary of existing research5 conducted by the Centers for Disease Control and Prevention in 2001 estimated that approximately one in 3,500 to 8,900 males is affected by the full mutation of the FMR1 gene, and that one in 1,000 males has the premutation form of the FMR1 gene. This study also estimated that one in 250 to 500 females in the general population has the premutation. Another study6 estimated that one in 4,000 females is affected by the full mutation.
Although these estimates are useful in trying to understand the impact of Fragile X on various communities, keep in mind that these numbers are only the best estimates based on the available information. Many factors can affect the completeness and/or accuracy of the available information, which means that the number of people affected by Fragile X could actually be different. The important thing to remember is that, when you consider the individuals affected by full mutation and premutation forms of the FMR1 gene, their families, and their communities, this condition impacts hundreds of thousands of people.
* The number of people affected by a full mutation or a premutation of the FMR1 gene is still being studied. At the time this article was printed, few population-based studies had been done to determine exactly how many people were affected by Fragile X. The estimates included here from Crawford, Acuña, and Sherman differ from other estimates, including those provided by many of the national organizations dedicated to Fragile X (Bailey & Nelson, The Nature and Consequences of Fragile X Syndrome, Mental Retardation and Developmental Disabilities Research Reviews, 1:238-244, 1995; Prevalence of Fragile X Revisited and Revised, The National Fragile X Foundation Quarterly; Winter, 2002). For more information, please consult the specific articles or the national organizations listed in the Where can I go for more information about Fragile X syndrome? section of this article.
Viewers share their comments
Fragile X Syndrome - Educational Options Question: Do you have a child with Fragile X? Please discuss the educational opportunities in which your child has participated.
Fragile X Syndrome - Social and Emotional Issues Question: How does your child with Fragile X deal with social situations? Please share how you cope with your child's emotional issues.
Fragile X Syndrome - Experience Question: Please describe your experience with fragile x syndrome.
Fragile X Syndrome - Symptoms Question: What symptoms do you or your loved one experience from fragile X syndrome? How do you cope?
Fragile X Syndrome - Carrier Question: Did you ever undergo genetic testing to see if you are a fragile X syndrome carrier?
Get the latest health and medical information delivered direct to your inbox FREE!