Jacqui Main Exercise Physiologist at Dizzy heds & Co.

08/10/2025

Now the NDIS want to be rid of EP as an NDIS service! I feel the work I do is so important and I can’t imagine not being able to help people!!

So I am going to write a response to the NDIS but I need your help.

You can help me by:

1. Emailing me any existing research you have come across on the efficacy of exercise physiology for people living with disability

2. If you are willing to share your EP journey and how it has impacted your journey living with disabilities/ conditions by providing your: name, age, disability, location, length of time seeing EP, goals, outcomes, and risk of not accessing EP.

It is so frustrating that they think EP services are all the same. That it is just prescribing exercise. Well, it’s not!!!

You can also take the NDIS Evidence Advisory Committee survey: http://bit.ly/42xZmzT

If you wish to be involved in a response, please email me at jacqui@dizzyheds.com.au

21/05/2025

24/02/2025

It’s been a few weeks now since the The Ehlers-Danlos Society 2025 Global Learning Conference in Brisbane.

I was grateful to be asked to present across the 3 days on:

* Collaborative Approaches to Advocacy and Support - Presenting on my life and experience as a Caregiver to my 5yo child (cried all morning but held it together to present thanks to )

* Addressing the Unmet Needs for those living with EDS & HSD in Australasia

* And Leading the session on my favourite topic on the Sunday, 3 times over with amazing colleagues on “The Management of POTS in EDS & HSD” with , , Caelum from and an inspirational patient story.

I loved that we got a Global Learning Conference to Australia, and this enables me to meet the people I have seen across a Zoom Screen for the past 5 years in real life Dr Alan Hakim, Faye Moran who does an AMAZING job at bringing all this together with the wonderful team, Nagat Abduljalil, Stacey Simmonds and her BRILLIANT headbands and of course the person that makes all this happen .bloom .danlos

To finally also meet with the amazing Hypermobility “Inner Circle”, created by Juliet Hall 5 years ago. Not only have we supported, educated, and assisted each other through business, patients, through the hard times of COVID-19, I cannot thank this team of high quality EDS & HSD and Co. legends for all we have achieved!

From this network, we have presented to anyone and everyone that would have us and listen to us, including the APA, ESSA, Rheumatology and Pain Associations, and created a page “Hypermobility for Australian Allied Health”.

We have also now expanded our “Inner Circle” FB, to include many of the “Hypermobility Legends” across Australasia.

I had such an amazing time, met so many amazing people I’d never met before, and/or finally face to face. Took quite a few days to recover of course, but all worth it.

I am so proud to have majority of our CORE Network of Excellence https://www.edsaustralia.com/ all presenting at this conference , Dr Rebecca Ryan and Nicole Frost.

14/01/2025

08/01/2025

Can’t wait to finally meet Jeannie face to face 🦓🤗

08/01/2025

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07/01/2025

💻 Early telegraphy with a Physical Therapist from Utah about a talented injured Basketballer with hEDS

👦Little man to Daycare for a few hours

🛒Groceries done

🌊Refreshing dip in the Ocean before heading home to get stuck into some business development and presentations for the upcoming EDS Global Learning Conference in Brisbane and EDS Virtual Series for ESSA

18/11/2024

TOMORROW I will be having hip surgery so will be out of action for work for a little bit!

I’m so nervous and anxious to be honest as this is the first surgery I’ve had done since being a Mumma (and single Mumma) so it’s more the coping and functioning after than the surgery itself - I’ve had so many I am well versed with this.

Grateful to have family support for the first week and cannot thanks my Physio and OT friends for helping me get prepared!

I’ve hip pain for about 20 years from all my sporting years with the hip pathology I have and it’s taken until hip surgeon number 3, and hearing about the wonderful Mr John O’Donnell who knows Hypermobility and EDS.

Hoping the recovery will go smoothly so I can get back to seeing you, my wonderful patients next week. Sarah will be around but I need to focus on my recovery so I can do things I haven’t been able to do in a very long time and what has impacted my ability as a Mum.

Thanks in advance for your understanding 🙏🏻🫶

09/09/2024

I began working with this amazing resilient young lady, Sophie, and her family when she was in Year 9. It made my day today when Soph sent me this message to let me know how she has been advocating more and more for POTS and telling her story to raise awareness.

I am proud of Soph for the really difficult decisions she has made, such as completing her VCE over 3 years. A decision so many of my teenager’s struggle with understandably.

I was also proud to hear, Soph to this day still uses all her strategies she was taught and implements all her tips and tricks daily to manage her symptoms as best as possible. I am proud to see her still striving for her goals and myself, like many others around her will continue to support her on this journey.

As another patient once said to me, “the silver lining of these illnesses is that we have an opportunity to redesign life.” She meant by this, it enabled reflection, on her job, family time, where energy was going everyday and the like. This honestly really resonated with me as someone who also lives with invisible illnesses. I found a “new way” of doing life.

October is Dysautonomia Awareness Month, so you will hear so much more and see so much more through the month of October, but we will never stop trying to raise awareness for this condition and many other invisible illnesses.

Sophie has already commenced her fundraising for POTS ahead of being ready for Dysautonomia Awareness Month. She has set up a GoFundMe page if you’d like to check it out https://gofund.me/d3dba773

I love celebrating all the people I work with, big or small. Know I am proud of you all for continuing to put one foot in front of the other each day, and yes there are days these steps are backwards. But I will always strive to support that step forward again.
soph

20/07/2024

14/07/2024

This is the extent some of my forward planning and pacing has to go to some weeks. Many weeks ahead until about November will look like this!

I know it may look a lot, and time consuming, but for me, I love using colors 🤣 and it keep me calmer as I know what’s coming up and big bonus points for NOT HAVING TO THINK!

I was a very late diagnosed Inattentive ADHD last year at 40yo! Boy does life make sense now 🤪

So when I have multiple impromptu things on and work wise and for my little boy, I need to remember what I need and when as I’m often running (well walking swiftly) between home, car, appointments, daycare/kinder.

So I’m also well know as “the bag lady” as I divide up things for each task ie: little man’s appointments and what he needs for them, and my notebook, lunch bags, snack bags, drinks, work tasks, laptop etc

And this week, one of my favourite conferences is on, the .danlos society global learning conference in Phillidelphia. I had planned to attend this year however, as you can see life is busy! So in order to be awake at some silly hours to listen to some amazing speakers, forward planning and pacing will support me through 🙏🏻🙂