We recently held a workshop on Ehlers Danlos Sydnrome (EDS) in our Bondi Junction clinic. EDS is a rare connective tissues disorder that affects almost all parts of the body. 

 

Why we did it:

EDS is not as well recognised or understood by health professionals as it should be, and we wanted to be part of changing this. We also wanted to gather like minded health professionals in one space, so we can grow and learn from each other, as we continue to see more and more patients with EDS, we know the only way learn and better support our patients is together. 

 

 Who spoke:

We had a great line up of speakers that included Leah Harris, Nicole Frost, Professor Ian Wilcox, Samanthe Slatem, Dr Muhammed Marj, Michelle O'Sullivan, Min Tze Chew and Laura Hill. 

 

 What we got out of it/ some key take homes:

We created  great networking opportunities so that we can all better support our patients living with EDS as it really does take a whole multi-disciplinary team. We learnt and heard from so many people how important it is to LISTEN to people with EDS and understand their symptoms, they present with symptoms and responses to treatment that are not in the text books, as a result they have so often been dismissed and misunderstood.