Hi everyone.

I'm seeking your help in getting hydrocephalus recognised as a disability on the National Disability Insurance Scheme.

Let me explain.  It's an incurable brain condition caused by the overproduction of cerebrospinal fluid around and in our brains.  It comes from the Greek 'hydro' meaning water, and 'cephalus' meaning brain.

We each have some of this fluid cushioning our brains, to act as a 'shock absorber' from daily movement and activity and to 'clean' our brains on a daily basis.  Too much, however, is a problem and causes many problems in a patient's life, including balance, vision, memory, organisation and orientation.  It is the other half of the more well-known spina bifida, whose effects are more widely recognised and acknwledged.

I'm seeking your help in order to get recognition for the 2% of people who live with this condition on a daily basis and for which there is no cure, except two treatments, a shunt system, being a one-way valve and catheter which can fail within two years, or an endoscopic third ventriculoscopy, which involves boring a hole into the patient's skull and nicking a small hole into the third ventricle.  Both of these have drawbacks and benefits, however, there is no ultimate cure for hydrocephalus.

I have lived with this condition all my life and have experienced a lot of misunderstanding, discrimination and negative attitudes from the well-meaning wider community, as have the community.  It's time that the community at large realises that this is a real issue and sees its effects.  We would just like recognition, not pity.

The treatments are outdated, and the shunt system as such is over a century old.  We need to find a cure for this condition.