There are many unique challenges that face individuals and families touched by Fragile X Syndrome (FXS). As someone who comes from one of those families, I am all to familiar with these challenges.
Often there is a grieving process that happens when finding out that you or someone you love has been diagnosed with FXS. The hopes, plans and dreams for life may change, and coping with this can be difficult. The time, energy and money spent on finding and securing proper resources can make one extremely frustrated and exhausted.
The impact on relationships in families with FXS can be immense. Marriages are tested, siblings may feel neglected or resentful, and parents can be overtaxed, overextended, stressed, and can experience feelings of guilt and resentment toward their children. The non-immediate family members may not understand FXS or have decided they want nothing to do with it. This can feel isolating for those family members who are actively dealing with FXS on a daily basis.
Finally there are issues such as anxiety, depression and cognitive impairments that FXS premutation carriers are at a greater risk for.
Being touched with FXS can feel so overwhelming. However, the most important thing to remember about FXS is that you are not alone .
I am a seasoned therapist with an intimate experience and knowledge of Fragile X Syndrome. I’d love to hear your story, work with you in facing your challenges and help you cultivate a more real and fulfilling life.
According to the National Fragile X Foundation "Fragile X syndrome (FXS) is a genetic condition that causes intellectual disability, behavioral and learning challenges and various physical characteristics. Though FXS occurs in both genders, males are more frequently affected than females, and generally with greater severity."
Fragile X Resources
www.fraxsocal.org
www.fragilex.org
www.millerchildrenshospitallb.org/centers-programs/fragile-x-program