Jul 22-28 is National Pain Week 2024, hosted by Chronic Pain Australia.
Neurofibromatosis (NF) is a condition hallmarked by its diversity and unpredictability, typically impacting each and every person in unique ways.
Pain, however, is an almost universal experience, and it remains a serious and under recognised issue.
In our recent Health and Social Impact Assessment into NF in Australia, almost 3 in 4 (74%) of survey respondents shared that they experienced bodily pain in the past four weeks.
The physical impacts are just the beginning.
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What causes pain in NF?
NF is a genetic condition causing tumours to grow on nerves deep inside the body or just below the skins surface.
The reasons for pain in NF are vast and can stem from multiple sources, including the formation of tumours on particular nerves, in the muscles and in the spine.
Nerves that are just below your skin (called cutaneous nerves) can also dysfunction, thought to be similar to a “misfire” where your nerve sends pain signals to your brain, even when there's no reason for it.
For some, pain can be the first sign of NF, for others it’s a constant reminder of the presence of the condition.
How can we manage pain in NF?
There are currently no approved treatments for NF specifically.
People living with NF and chronic pain can trial a multitude of therapies including clinical and complimentary options.
Beyond physical therapies, learning to deal with the emotional impact of chronic pain is also of vital importance.
Learning you are not alone, finding support to help you identify the right therapies and talking to someone that understands can all help.
The Children’s Tumour Foundation has a free help line for people impacted by NF, and also offers a monthly NF Connect session where people can share their experiences and first-hand accounts of therapies that may be working for them to manage their circumstances.
If you would like to learn more about NF Connect please click here.
The Children’s Tumour Foundation can also help you identify NF specialists local to you to compliment or begin your pain management plan. Contact our support team.
wATCH NF PAIN MANAGEMENT WEBINAR
What is National Pain Week?
National Pain Week 2024 is Australia’s annual week of action, bringing greater awareness to the experience of living with chronic pain.
By doing so, Chronic Pain Australia hopes to reduce the social and other barriers related to living with and managing chronic pain.
This year’s theme, ‘Pain colours your world’ with the call to action “be a painchanger”, aims to bring greater awareness to the vicious cycle of pain experienced by people living with chronic pain. Pain is a vicious cycle that can trap people in a spiral of stigma, isolation and mental health challenges, colouring everything about your life.
rEAD THE NATIONAL PAIN REPORT
LEARN MORE ABOUT NATIONAL PAIN WEEK
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