The Moorland-based grandmother discovered she was a carrier at the age of 67 when some of her grandchildren were diagnosed.

Unfamiliar with it at the time, she has since immersed herself in learning what she can and encouraging people to be tested, even before they have children.

Fragile X Awareness Day is on July 22.

The Fragile X Association of Australia describes the syndrome as the most common known cause of inherited intellectual disability and the most common known single gene cause of autism spectrum disorder.

It occurs when the repeat expansion of the FMR1 gene is over 200 (termed the full mutation) and can cause intellectual disability, specific facial features, and behavioural challenges including autism, ADHD, and social anxiety.

Fragile X Syndrome can occur in both genders although males are more frequently and typically more severely affected than females.

People living with it experience the effects throughout their lifetime and varies from person to person.

And while it isn’t very well known, Margaret said it is far more common than people think.

“One child is born every week with the syndrome and 20 are born with the carrier gene every week.”

She said at the time she discovered she was a carrier, she was told it was very rare.

“But there are 100,000 people in Australia with it. That’s increasing and there’s more awareness.”

A DNA test is needed to find out whether you have it or are a carrier and she said it normally traces back to the grandparents.

Margaret also explained that a male carrier can’t pass it on to his sons but will pass it on to all of his daughters, while a female carrier can pass it on to both males and females, although the risk is only 50 per cent.

“It’s the XX chromosome.”

Margaret said the big focus for this year’s awareness campaign is on women’s health, the Fragile X premutation and female carriers.

“We’re looking at the impact on the mothers”.

The Fragile X Association of Australia states that about one in 260 women are carriers of the fragile X premutation and that people who carry the permutation have an increased chance to get specific health problems.

Margaret is determined for more people to learn about it. “The more people know about it, the more people can do checks.”

The premutation can affect pregnancies, children and other relatives.

To mark Fragile X Awareness Day, the FRAXA association in America, has announced the Niagara Falls Illumination Board will light up Niagara Falls in teal (the colour chosen in America. Australia’s colour is orange).