Annabelle's Challenge Australia
Meet Bradley
I am the representative for Annabelle’s Challenge in Australia.
I live in Victoria, Australia and am a husband to my wife Holley and a dad to my two little boys Hunter & Isaac. Both of my sons also have vEDS due to inheriting this genetic syndrome from myself.
I was diagnosed with vEDS - vascular Ehlers Danlos Syndrome in January 2019 after having multiple spontaneous aortic and arterial dissections throughout my body. Because of this and my family history of sudden deaths at early ages, I then underwent genetic testing which confirmed my vEDS diagnosis.
My mother passed away from vEDS at aged 44 and this is how I inherited this syndrome. My two young sons also have been diagnosed with vEDS. It was 50/50 chance wether the gene would be carried over and unfortunately it was.
I also have quite a few other family members who also have a vEDS diagnosis due to undergoing genetic testing after my diagnosis was discovered.
Mine and Holley’s goal is to help raise awareness for vEDS and to assist Annabelle’s Challenge in giving vEDS patients and families a voice and to get the word out there about vascular Ehlers-Danlos Syndrome.
Australia Support Group
It is estimated 280 people in Australia have Vascular EDS.
Although Australia has an established network of genetic services the lack of support in the country is a concern both for newly diagnosed and for many who are going under diagnosed and misdiagnosed.
Annabelle's Challenge has extended the support we provide to Australian members:
- Free MedicAlert membership for 12 months & $10 towards jewellery / Bracelet.
- Free Helpline support via Zoom and /or WhatsApp +441617974746
- Virtual Support Group Meetings.
- Access to the UK private Facebook group.
- Free airport transfers when attending our UK conferences.
- School Support.
Concerned about vascular EDS? Please get in touch with us. You can request a virtual call via Zoom.
Imagine you are sitting at home and suddenly your partner collapses. You call an ambulance and you and your partner's lives are about to change forever. They are going to get a devastating diagnosis that will affect every member of your family. But unfortunately it isn't going to be the only devastating diagnosis they receive in only a short space of time.
Meet Brad & Holley Jones, a young couple who's lives were rocked with devastating diagnosis. They are incredibly resilient, strong and inspiring!
MedicAlert Australia
MedicAlert® is always there. Protection 24/7 when you need it most.
Worn around your neck or wrist, a MedicAlert® ID communicates your crucial health information when it matters most.
MedicAlert also connects to your clinically validated online health record, accessible 24/7, through our emergency response service. So first responders can quickly detect your condition, allergies, medications, devices and history – and your healthcare team can always see your full story.
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Research
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