Wednesday, 28 August 2024

Ehlers-Danlos syndrome

Paul MERCURIO (Hastings) (09:56): EDS. At least eight out of 10 people that I mention EDS to have no idea what it is. If I tell them it is Ehlers-Danlos syndrome, they still have no idea what it is. Yet it is possible that half a million Victorians, both women and men, suffer in chronic pain from this syndrome but are unseen, unheard and unknown. There is no cure, no treatment, no wraparound service, no hub for those that suffer to go to for support, advice or help.

So I would like to thank the member for Northcote and the member for Mordialloc for inviting my favourite middle daughter Emily to come into Parliament last sitting week to talk about her horrific journey through chronic pain and the absolute nightmare of navigating through a myriad of doctors that just did not believe her and knew nothing about EDS. Both members listened to Emily for half an hour, and she spoke about her journey over the last 10 years in trying to find answers to what was wrong with her. Like many sufferers, Emily would spend days under her electric blanket in chronic pain, not being able to move, not being able to eat. One day I asked her, ‘Where does it hurt?’ She said to me, ‘Every fibre of my being hurts, Dad.’

There is more I could say, but I would ask every member here to look up EDS. Thanks to the women’s pain forum and the recent survey, hopefully light will be shone on this condition and sufferers will no longer be unseen or unheard.