Saturday 21 November 2015

Couple Sues Over Missed FX Diagnosis

I think this story sums up the lack of up-to-date information out there about Fragile X. I have personally been told by families that Dr's are refusing to test for FX because they think the child doesn't 'look' like they have it.

30 years ago when FX was first discovered there was a list of physical features that were listed as part of the symptoms list.  This list includes large ears, a long face etc. We now know people with full mutation do not necessarily have those characteristics, my two kids are a classic example of this.

If you have a child with intellectual delay, autism, speech delays, ADHD or feeding issues, please have a look at the Fragile X Australia website and get current, accurate information (http://fragilex.org.au). It could be FX.