Having CKD is overwhelming and the journey can be full of turns and detours

Having CKD is overwhelming and the journey can be full of turns and detours

“We were completely unaware of an illness like this. Making sense of the diagnosis of the disease and managing the disease seemed like a monumental task. I was a new mother in a new country faced with what was an impossibly difficult situation with no support at all. It would have made a huge difference to have someone making sense of the disease, the medication regime, the side effects and the prognosis. We were not aware of the benefits and support that is available for patients like us, and were too overwhelmed and exhausted to go looking for information. In fact we started accessing car parking benefits after 18 years at the hospital.”

– Mother of a child with Chronic Kidney Disease

Caring for a child with chronic disease can take unexpected tolls on families. We hope to ease the burden of disease on families through our CKD patient navigator program. For more information visit www.navkids2.com.au  or email us at schn-navkids2@health.nsw.gov.au.

 

 

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