Fragile X Awarness Day 2014

Fragile X Awareness Day on July 22nd aims to create an understanding for a condition affecting about 100,000 Australians each year.

64% of females suffering from this condition experience developmental delay or intellectual disability. 94% of males do.

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What is it?

Fragile X syndrome is extremely similar to Autism, except that is it genetically contracted and can be tested with a simple blood test. Yet although it has been found in all parts of the world, the majority are yet to be diagnosed.

Sufferers can experience obsessive-compulsive disorder, anxiety, self-injury and severe development issues including learning and speech difficulties. In fact, it is the most known cause of inherited intellectual and developmental disability. They may also even experience physical manifestations of the disease from loose joints to seizures. Female carriers of Fragile X can experience menopause as early as twenty-four.

Fragile X is caused by a gene mutation that causes a low production of protein vital for normal brain development. It has no existing cure and is passed down genetically through carriers of the disease. Females are more likely to carry on the gene.

Who does it affect?

Every week in Australia one child is born who is fully affected and 20 children are born who are carriers. The Fragile X mutation often increases when passed from mother to child and down through the generations of a family, meaning that children born with the disease frequently appear in families with no previous history of intellectual disability and must quickly learn to deal with the conditions. Fragile X can affect males and females of all cultural backgrounds at any age. Many carriers who see no symptoms do not know that they are affected until child birth or they experience the early on set of menopause or osteoporosis.

Fragile X can also affect teachers, friends, medical practitioners, psychologists, employers and anyone close to a sufferer or carrier.

How can I help?

The best way to get involved this Fragile X day is by holding a small scale event amongst family or friends or even in the office. A simple morning tea, dinner party or picnic can help raise awareness for a disease that affects as many Australians as cystic fibrosis.

If you are interested in holding an event, contact the Fragile X Association of Australia here for information on fundraising. They have posters, ribbons and other items available for sale to promote awareness for diseases that are not rare, just veiled behind common misconception.

If you’re not able to hold an event but you would still like to contribute to the cause, then you can make a donation to the Fragile X Association of Australia here. All proceeds go to helping Australian families coping with the condition.

 

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