You may recall the unfortunate story of injured worker Soula, who was injured “below the belt” when a gym ball she sat on whilst working exploded, suffering an “invisible” but extremely painful injury called a pudendal nerve injury. Soula’s claim for workers compensation in Victoria was a real nightmare, she endured horrendous IMEs, her legitimate benefits were not approved and she was also put on the most outrageous form of surveillance.
Injured worker Soula Mantalvanos appointed Director of HOPE
Soula started a website as well as a Facebook page where she shares her workcover ordeal, but most importantly where she shares knowledge, experience and empowers other people who suffer from the painful pudendal nerve injury condition.
Soula was recently appointed one of 12 Directors of HOPE – the Health Organisation for Pudendal Education! And we are so very proud of her achievement!
Appointed as Director of HOPE
Truly flabbergasted and so extremely honored to be made one of 12 Directors for the National charity organisation, HOPE (Health Organisation of Pudendal Education).
Firstly, who are HOPE?
HOPE is a charitable organisation that offers support and information to patients who have pudendal neuropathy (PN), pudendal neuralgia (PN), or pudendal nerve entrapment (PNE). HOPE‘s goal is that after visiting their website anyone with PN issues will be able to develop a plan of action that will help them get their life back.
And now you’re all probably wondering how this happened…
I obviously don’t have to explain how actively involved I am in seeking treatment and understanding for PN and I probably don’t have to explain my endless mouthing-off and communication of every detail that I find. But really, I’d say social media is really the drive behind my great news. Director of HOPE and cyber friend, Catherine Aurubind nominated me thinking I could contribute my resources of PN treatments for Victoria. Of course my first statement was, ‘I can’t contribute much, physically I’m still far from free’. But what sort of organisation would HOPE be if they weren’t made up of people who had experienced PN and if they weren’t setup online? And what sense that makes for anyone experiencing this horrid condition as we all struggle greatly with getting out and about. Where can we find relevant information, where can we find help? Online… via the wonderful cyber world and social media! It certainly has been a major contributor to my progress.
What can HOPE do?
Lots. Not only are they Wiki approved and listed as one of the external links under Pudendal Nerve Entrapment but HOPE’s website is set up to be the National resource and support for anything PN related. That includes providing funds for much-needed treatment and even transport costs if necessary. HOPE also host, what probably is, the largest and most relevant forum for PN. This alone is a massive resource.
What can you do?
Spread the word. PN is still far from being understood and acknowledged around the world therefore treatment and empathy are also limited. And as I mentioned, HOPE is a charitable organisation so heading to their site and making a donation or buying the bangles will help them help others.
There is life with PN, but it needs much understanding, empathy and education.
Director for HOPE
Soula Mantalvanos is featured in PainAustralia
Social Media for Pain Education
If that is not enough, Soula was recently also interviewed by Painaustralia for a story in this week’s newsletter, Social Media For Pain Education.
Social media has been Soula’s legs and voice over the past 6 years, allowing her to share her story and advocate for chronic pain, specifically Pudendal Neuralgia.
Needless to say she (and we) are so thrilled to share the story and Painaustralia’s newsletter and hope this leads to more awareness for all chronic pain issues and more empathy and understanding for people in pain.
WorkSafe Vic ought to be really ashamed of themselves!
Read Soula’s interview as featured in PainAustralia’s magazine in a new window