While Fragile X Awareness Day is marked on 22 July (today) to spread information on this inherited genetic condition, Fragile X is a year-round experience for those affected by it.
What is Fragile X?
Fragile X-associated Disorders are a family of inherited conditions caused by alterations (expansions) in the FMR1 gene (Fragile X gene) which is located on the X chromosome. These disorders include a wide range of physical, intellectual and behavioural symptoms that can affect family members in different ways.
It is estimated that about 90,000 people in Australia are impacted by Fragile X in some way – as carriers of Fragile X, or with Fragile X syndrome.
Treatments for Fragile X?
While there is no cure for Fragile X syndrome at the time being, there is a range of treatment interventions and management strategies that help people manage.
An integrated approach of occupational, physical, special education, psychological, and speech therapies can be incorporated into the daily routines of people with Fragile X.
Anxiety, ADHD, obsessive-compulsive behaviour and mood instability can be managed with medications recommended by a doctor.
Support for families?
Support can be found with the Fragile X Association of Australia for families and people across Australia who are affected by Fragile X Syndrome. A family support counsellor is also available to connect with people over zoom, phone or face to face when suitable.
Visit the Fragile X Association of Australia Support page - https://www.fragilex.org.au/for-health-professionals/support-for-families/
The "Light Up for Fragile X" campaign on will run on July 22. Bridges and Landmark buildings will be lit orange for Fragile X in cities including Adelaide, Brisbane, Canberra, Hobart, Launceston, Melbourne, Perth and Sydney! #lightupforfx. Look out for these lights in your city and converse with friends and family to educate and raise awareness of Fragile X Syndrome.
Looking for a light up location? Check out the map to see if there's one near you.
Help is at hand
The good news is that help is at hand. If you or a loved one are affected by Fragile X and are an NDIS (National Disability Insurance Scheme) participant, NNA Direct Support Services can match you with a support worker or nurse to provide quality in-home care.
Our comprehensive services include:
Help at home
We can provide these on a one-off, short- or long-term basis, offering you a flexible and personalised package to suit your needs.
Want to know more? We understand that everyone is different, so connect with us to talk over your individual requirements with no obligation.