Rates of cerebral palsy have decreased by a third

Rates of cerebral palsy have decreased by a third

Cerebral palsy describes a group of disorders that affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It is the most common physical disability in childhood. Some people with cerebral palsy also have other problems including epilepsy and/or difficulties with their speech, vision, hearing and intellect.

In Australia there are approximately 37,000 people with cerebral palsy. Worldwide, the incidence of cerebral palsy is 1 in 700 births and there are currently 17 million people in the world who have cerebral palsy.

The Australian Cerebral Palsy Register is a research database that was established in 2008. Information on the database (which does not include names of individual people) is used by cerebral palsy researchers to help identify causes of cerebral palsy, understand the lived experiences of people living with CP and to assess services and prevention strategies.

One of Australia’s first participants on the Australian Cerebral Palsy Register is Hannah Diviney. She has written this guest blog for Miracle Babies Foundation and brings us some amazing, ground-breaking research.


Hi Guys!

I’m Hannah and I’m a 19-year-old Miracle baby (born at 28 weeks) with cerebral palsy (CP). To tell you a little bit about me, I absolutely love writing, listening to music and advocacy work among many other things.

I’m writing this to tell you about some exciting news and things we’ve discovered about cerebral palsy thanks to the incredible work and research of the Australian Cerebral Palsy Register, made up of a team of brilliant scientific minds. They wanted me to be the one to tell you all, because I was one of the Register’s first participants back in the day.

But before I tell you all about that, I wanted to take a step back and actually explain what cerebral palsy is and what it can look like to live with it for anyone who might not be familiar.

Cerebral palsy is a life-long disability, caused by damage to or a problem with the developing brain. Over 40 percent of people who end up with cerebral palsy are born prematurely, while others may have suffered strokes after birth, or their brains may have had issues developing all the way back in pregnancy. Cerebral palsy has the potential to cause a number of issues including impairment to fine and gross motor skills which can include mobility and speech, hearing impairment, intellectual delays, problems with vision and epilepsy to name a few. No two cases of cerebral palsy look the same and there is currently no way to determine its exact cause for any individual. There is also as of 2019, no known cure.

So now, that I’ve explained a little bit more about what cerebral palsy is and can look like, it’s time for the good news!

According to the Australian Cerebral Palsy Register’s latest research and report, over a 10 to 15 year period, the rates of cerebral palsy have decreased by a third! See the cool graph below!

CP rates drop - graph.PNG 

This includes a first-time reduction in the number of full-term babies born or diagnosed in early childhood with cerebral palsy, the group that makes up the largest percentage of people with cerebral palsy.  It also includes a substantial reduction in cerebral palsy for babies born under 28 weeks of age. To put it in even greater perspective, a baby with cerebral palsy has gone from being born every fifteen hours to now every twenty. How amazing is all of that?    

It’s so amazing in fact that Sarah and I got the chance to tell Australia all about it on Studio 10  and Nadia was interviewed on Sky News.

This is really exciting landmark research and everyone involved is rightfully incredibly proud. I can tell you as someone living with cerebral palsy, that those figures and the possibilities they suggest for the future bring a huge smile to my face. They greatly reduce the possibility of young kids having to grow up and go through what I and so many others have.

These types of results while not being able to be linked to a distinct ‘why’ are the direct payoff of the work of unsung Australian heroes across our medical and research systems. They are the men and women on the frontlines making sure that new research is used in practice, that pregnancy, birth and those crucial years of early childhood, where most development occurs, are as healthy as possible.

Without them, I certainly wouldn’t be here and this beautifully resilient community you’ve all built together wouldn’t exist either. Their incredible work which has led to these results includes more nuanced approaches to treatment of high risk pregnancy, a greater understanding of how to best care for the tiniest and sickest babies in neonatal intensive care, the discovery of ‘cooling’ as a technique to soothe swelling and inflammation in the brain, and a diverse range of public health campaigns promoting healthy pregnancies, child safety and health.

So, you might be asking after all of that, what’s next?

Well, there is much to be hopeful about. Across Australia and New Zealand, studies are currently running to investigate the impact of cooling and this drug called EPO on babies considered at incredibly high risk of developing cerebral palsy. The possibilities of genome work are also being explored and public health campaigns are occurring to reduce the risk of infections in pregnancy.  There’s incredibly exciting things on the horizon and I hope that someday I’ll be back in this space, explaining more leaps and bounds we’ve made.

These leaps and bounds or the opportunity for me to write about them would not have been possible if it weren’t for the Australian Cerebral Palsy Register group who work so tirelessly to give us these reports. If you want to see the whole report click HERE.  

All their work and this incredibly important, hopefully globally game-changing research, could not be accomplished without the generosity of donors, organisational support and most importantly all the families throughout Australia who are willing to let the team use our important information.

 

Sending you all love

Hannah xxx

 


 

 

Hannah Diviney wrote this blog with input from:

 

Dr Sarah McIntyre

Senior Research Fellow, Cerebral Palsy Alliance, University of Sydney

 

Prof Nadia Badawi

Medical Director, Grace Centre for Newborn Care, Sydney Children’s Hospital Network

Macquarie Foundation Chair of Cerebral Palsy, Cerebral Palsy Alliance, University of Sydney

Author

Miracle Babies Foundation & Guest Blogger

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