Fragile X

The Sydney Fragile X Clinics have been established to meet the specific needs of individuals with Fragile X Syndrome. The emphasis at the clinic is to identify effective treatment and intervention strategies that will optimize the person’s abilities and enhance their life.

Apart from the general assessment of the individual with Fragile X, some of the situations where the clinic may be of particular benefit are:

The children’s clinic is a joint venture of the Fragile X Association of Australia and The Children’s Hospital at Westmead, and the adult clinic is a joint venture between the Fragile X Association of Australia and the Developmental Disability Clinic.

A clinic appointment will consist of two half day sessions, and will involve a comprehensive analysis of the individual needs of the person with Fragile X, including behaviour, speech and language, sensory and medical issues.

The clinic provides a multi-disciplinary team comprised of a doctor, speech pathologist, occupational therapist, clinical psychologist and a genetic counsellor. All clinic staff are experienced in the specific needs of individuals with Fragile X.

Reports will be prepared following the clinic visits, detailing strategies and recommendations for the individual to follow up with their own support people.

Following the great success of our fund-raising dinner in 2003 and subsequent donations and fund-raisings, we are able to offer clinic appointments at no cost to financial members of the Association. For non-members, the cost is $1000.

If you would like to apply for a place at either clinic, please download and fill out the paper application and mail it or send as an attachment to an e-mail to the Association office.

My son Tom is 4 years old and has fragile X.

It was hard to find a health professional in our area to see Thomas, who was familiar with and had actually worked with fragile X . Most of the people we had seen previously had gained knowledge of Fragile X through a text book or the Fragile X information booklet.

We visited the Sydney Fragile X clinic at Westmead hospital in 2005.

The clinic involved some preparation; many people involved in Tom’s education and health care were required to fill out profiles and questionnaires describing Tom. This allowed the therapists to build up a profile of Tom and to identify any concerns before they met with us.

In all, the clinic provided us with an opportunity to meet with a team of therapists who were experienced with Fragile X, working together to answer the many questions we had and to help give us an idea of what the diagnosis means for Tom and our family. An extensive report was received including an education plan and a general overview of Tom’s progress and health care requirements.

Tom and I both enjoyed our visit to Sydney and to the Clinic.

Paul

Sydney Clinic