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WORLD INCONTINENCE WEEK 19-25 JUNE

19 June 2017

CLAIRE’S STORY

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Claire D is probably more in tune with her body than most women in their 20s – a reality bought about not by choice, but the fact that she had been on medication to treat an overactive bladder since she was nine years old. Claire is now medication-free for the first time in many years, having received sacral neuromodulation (SNM) therapy in December 2015.

Unlike many stories of people who go on to receive SNM, the impact of Claire’s condition on her life and her path to appropriate treatment has been reasonably non-eventful. It hasn’t all been ‘easy’, but access to patient-centred doctors and living with the condition for most of her life, has given Claire a unique insight into how much timely access to appropriate healthcare really makes a difference.

Claire was lucky. The paediatric urologist first consulted about her bed-wetting and constant trips to the bathroom at age nine, was active in addressing her condition and prescribed medication.

 

While she reflects that she may have been somewhat more socially withdrawn than other children her age, Claire certainly never felt she missed out on doing what she enjoyed – except when it came to sleepovers or school camps.

“I have never really been into sports, but like every kid I just wanted to be able to do the normal things – go on a sleepover, or sit in class without needing to leave to go to the bathroom. Needing to get up and leave all the time brings a lot of attention on you and is distracting for everyone.

“It’s likely that I was born with my condition, but that it wasn’t diagnosed until I was around nine, because it was at this time that we realised I should have had more control of my bladder than I did.”

At age nine Claire started medication. The medication helped and she enjoyed what she describes a ‘much more normal life’.

Then, at 18, Claire transitioned to an adult urologist and was further diagnosed with a ‘small bladder’. In time, variations were made to Claire’s medication schedule and she started a round of surgeries that were repeated every six months until Claire’s most recent procedure for SNM.

With a love of travel and skiing, Claire admits there are some considerations when booking road trips or embarking on international travel which includes always knowing where toilets are available, but these are small considerations given the reality she’d be facing without appropriate treatment.

 

“I haven’t really ever changed my life. I have just moved with it. My doctor initially highlighted a range of treatments for OAB, including SNM so I was aware that therapy option was available when it might be appropriate. As I moved into my 20s and my health needs changed, SNM became an option I wanted to hear more about. I’m now medication-free and feel more in control of my body than ever.”

Currently studying psychology at UWS, Claire will graduate next year and hopes to become a clinical psychologist within a hospital. She sees it as an opportunity to be an advocate for someone who might not be able to speak for themselves when engaging within the healthcare environment.

“There’s an undeniable stigma associated with talking about bodily functions that I have grown up with, so perhaps I’m more desensitised than most. What’s frustrating is that these issues aren’t small. There are lots of people who are impacted – it’s just that they don’t want, or know how, to talk about it.

“Being diagnosed at such a young age, my early memories are of doctors’ appointments and strategies to address my condition so that I could live as normal life as possible. The commitment has always been to being in control of my condition, rather than it controlling me. While I was lucky in entering the healthcare system early and having my family (and then me) actively involved in the decision – making processes surrounding my treatment, I realise this isn’t the case for everyone. That’s something I’d like to address.”

Learn more about World Incontinence Week by visiting http://www.continence.org.au/

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