NFXF Blog

Most people first hear about Fragile X when someone in their family is unexpectedly diagnosed. We have two letters from two moms to share with you.

Many families struggle with deciding when the “right” time is and what to say. Here are some strategies to help in having a conversation with your daughter about her Fragile X syndrome diagnosis.

This list is by no means exhaustive, but is based on important information the Morgridge College students discovered when researching adult services for those with Fragile X syndrome.

Behavioral outbursts and aggression are critical incidents in the home or the community. For biological mothers of children with FXS who carry the premutation gene, there is the added predisposition to anxiety, as well as other emotional concerns, which can amplify their response to these critical incidents.