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Data & Statistics

  • Fragile X syndrome (FXS) is the most common known cause of inherited intellectual disability. [Read article]

  • FXS affects both males and females. However, females often have milder symptoms than males. The exact number of people who have FXS is unknown, but it has been estimated that about 1 in 5,000 males are born with the disorder. [Read article]

Diagnosis

  • Chart: First Person Concerned about Child's Behavior or DevelopmentThe average age of FXS diagnosis of boys is 35 to 37 months. Girls are diagnosed at an average age of 42 months. [Read article]

  • Parents are usually the first to notice symptoms of FXS at about 12 months of age for boys and 16 months of age for girls. [Read article]
    • Parents reported having to visit a physician repeatedly before the physician confirmed a developmental delay at an average age of 20 months of age for boys and 26 months of age for girls.
    • About 16 months typically passed between professional confirmation of a delay and the diagnosis of FXS.
  • More than one third (37.6%) of families reported that more than 10 visits were required before the diagnosis of FXS. [Read article]

The Average Age of First Concerns, professional Confirmation, Services, and Diagnosis in Boys

Co-Occurring Conditions and Characteristics

  • A national parent survey found that a significant percentage of males and females with FXS had been diagnosed or treated for other co-occurring conditions. [Read article]

  • Males
    • Developmental Delay (DD) or Intellectual Disability (ID): 96%
    • Attention Problems: 84%
    • Anxiety: 70%
    • Hyperactivity: 66%
    • Autism: 46%
    • Self-Injury: 41%
    • Aggressiveness: 38%
    • Seizures: 18%
    • Depression: 12%

  • Females
    • Attention Problems: 67%
    • Developmental Delay or Intellectual Disability: 64%
    • Anxiety: 56%
    • Hyperactivity: 30%
    • Depression: 22%
    • Autism: 16%
    • Aggressiveness: 14%
    • Self-Injury: 10%
    • Seizures: 7%

Percentage of Children with FXS Diagnosed or Treated for Other Conditions

  • Parents reported that 32% of the children with FXS currently experience sleep difficulties. [Read article]

  • Male children with FXS have higher rates of obesity (31%) when compared with typically developing same-aged peers (18%). [Read summary]

Adult Life of Men and Women with FXS

A national family survey of adults with FXS showed that:
[Read summary]

  • About 44% of women with FXS achieved a high or very high level of independence in adult life.
    • More than one third of women with FXS lived independently, often with a spouse or romantic partner, and required no assistance with activities of daily living.
    • The large majority of women had at least a high school diploma; almost half had full-time jobs (and typically received benefits from their job).
    • The majority had many friends and participated in many leisure activities.

  • About 9% of men with FXS achieved a high or very high level of independence in adult life.
    • The majority of men needed moderate to considerable assistance with activities of daily living and did not have a high school diploma.
    • One-fifth of men had full-time jobs; most did not receive benefits from their job.
    • Less than one-third had developed many friends, and only half participated in many leisure activities.

Premutation

People with a fragile X premutation do not have fragile X syndrome but might have another fragile X-associated disorder. Some people with fragile X premutations have noticeable symptoms, and others do not.

  • The exact number of people who have a fragile X premutation is unknown. A recent study estimated that 1 in 151 females and 1 in 468 makes in the United States may be affected by a fragile X premutation. [Read article]

  • These statistics are important because both men and women are at risk for having symptoms linked to fragile X-associated disorders. [Read article]
    • Women with a premutation reported their last menstrual cycle at an earlier age than women without a premutation (48 vs. 51 years).
    • Men and women with a premutation were more than four times as likely to report dizziness or fainting as people without a premutation (18% vs. 4%). Men and women with a premutation were more than twice as likely to report numbness as people without a premutation (29% vs. 13%).

  • Twenty-three percent of people with a premutation had a child with a disability. Twelve percent of people without a premutation had a child with a disability. [Read article]

  • A national parent survey found that a significant percentage of males and females with FXS had been diagnosed or treated for other co-occurring conditions. [Read article]

  • Males

    • Attention Problems: 45%
    • Anxiety: 36%
    • Developmental Delay: 32%
    • Hyperactivity: 30%

  • Females

    • Anxiety: 31%
    • Depression 28%
    • Attention Problems: 14%

Costs

A study analyzing the employment impact and financial burden experienced by families of children with FXS showed: [Read article]

  • About 47% reported that fragile X caused a financial burden.

  • Over 62% of respondents stated that they had to change work hours or stop work because of having a child with FXS.

  • Among different components of FXS-related out-of-pocket expenditures, the sum of medication and medical expenditures, including genetic testing, accounted for 27% of the total. Spending on developmental assessments and various therapies together accounted for 31% of the total.

  • The strongest predictor of the family-level economic impact of fragile X was the total number of co-occurring conditions among children who were affected.

 

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  • Page last reviewed: July 31, 2012
  • Page last updated: August 27, 2013
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