How is Fragile X syndrome inherited is a very common question, and one of the first things a newly diagnosed family asks. Let’s be clear – Fragile X is an inherited condition. With a very rare exception, when the FMR1 gene is deleted, the gene mutation came from either the individual’s father or mother. However, we all don’t talk genetics every day, so it can be a hard concept to follow. In fact – surprisingly – we still hear of doctors incorrectly stating how the gene mutation is passed down. Additionally, once an individual or parents receive a diagnosis, talking about that with potentially-affected family members can be difficult for many reasons. We have a separate page on how to share the information, including a draft letter to family members.
We have also pullled together this infographic and two-minute tip video to help explain how Fragile X is inherited. We hope it is helpful.