If your child has been diagnosed with fragile X syndrome, you may be feeling overwhelmed. Remember that seeking out information is not only necessary but empowering—it allows you to partner with your child’s care providers to make the best decisions for your child and your family.
Many families have been down this path and learned how to help their child manage and you will, too. Here at Children’s Hospital Boston, there are lots of ways we can help.
Fragile X is a genetic condition that can cause a range of learning and behavioral problems as well as physical issues, though these are usually less significant.
Some children with fragile X have mild learning disabilities, while others have severe intellectual disability.
Children with fragile X often have some degree of behavioral and emotional problems, such as hyperactivity, anxiety and sensitivity to sensory stimulation, including noise and touch.
It can affect both girls and boys, but symptoms are usually more severe in boys.
Fragile X is thought to occur in around 1 in 4,000 boys and 1 in 6,000 girls.
How Boston Children’s Hospital approaches fragile X
At Children’s Fragile X Program, we focus on two things: providing care for patients and families affected by fragile X and carrying out research designed to better understand fragile X and develop better treatments for it. We also work with adults who are premutation carriers who may be affected by, or at risk for, early ovarian failure or fragile X-associated tremor/ataxia syndrome (FXTAS) to make sure that they get the right treatment.
Along with the multidisciplinary care offered through the Fragile X Program, our patients also have access to the broad range of resources available at Children’s, including:
Our specialists maintain connections with all New England-based fragile X support groups. Your child and your family are in good hands here.
Reviewed by: Jonathan D. Picker, MD, PhD
© Children’s Hospital Boston, 2010