If you are reading this never having heard of Fragile X Syndrome or having heard the name and knowing nothing more about it, here is a brief introduction.

Fragile X syndrome is the most common form of inherited intellectual disabilty worldwide. In addition to intellectual issues there are many more possible symptoms, with males being more affected than females. In fact, females may not be classed as having an intellectual disability at all but may just have some learning difficulties and other challenges. Autism and autistic tendencies are a common feature and Fragile X is classed as an Autism Spectrum Disorder.

You may wonder why you know little or nothing about Fragile X when it is so common, as you have most likely heard of other commonly occuring disorders such as Autism or Down’s Syndrome. In the past children with Fragile X would not have had a diagnosis at all or may have been diagnosed with Austism or other learning disabilities. Fragile X has always been around but it was not until 1991 that the gene that causes the problems in Fragile X was discovered., a gene on the X chromosome. It takes time for information disorders to filter through and if you do not know someone affected by Fragile X then you may not have heard of it.

The reason the word “fragile” is used is not because of physical fragility but because of what the Fragile X gene looks like under the microscope. Being on the X chromosome girls tend not to be so severely affected; because they have two X’s and the non affected X compensates for the affected one. More recently it has been discovered that carriers can have their own distinct health issues. Male carriers may suffer from a Parkinsons type disease called Fragile X-associated Tremor/Ataxia Syndrome (FXTAS) and females may develop Fragile X-associated primary ovarian insufficiency (POI) which among other things leads to early menopause.

Although an inherited condition, because of the inheritance pattern of Fragile X and the fact Fragile X is not yet widely known, a carrier may not be aware of any other family members that suffer from it or even that they are a carrier. This is one of the reasons that it is so important that everyone knows about Fragile X. Although there is no cure for Fragile X there are many interventions that can lessen the impact of symptoms and improve the lives of those affected and support and information is available to help their parents, carers, medical and therapy professionals and teachers.

Please take some time to browse the rest of this site to familiarize yourself with Fragile X. Your knowledge may well help someone you know or meet in the future. Information about the many aspects of Fragile X can be found under the Fragile X heading of our main menu. You can access videos, documents and our information booklet from our Resources Menu

Please take some time to leave a comment here. If there is no history of Fragile X in your family, please let us know if you had either never heard of Fragile X or had heard about it but knew little or nothing about it.