Welcome to the Australia VEDS Support Group. This group and our meetings are led by Australia coordinator Bradley.
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.
VEDS Support Group
Our Australian vEDS group is a safe, confidential place providing peer support.
Facilitated by our wonderful volunteer coordinator Bradley, who has lived experience with vascular EDS.
They offer a welcoming environment for you to meet others who are touched by vascular EDS. They provide a helpful way to share information, listen to each other’s experiences and together find ways of navigating the complexities of living with or caring for someone with vascular EDS.
Our support groups can help you build self-confidence, become more informed and this may lead to you becoming more in control of your life with vascular EDS. They help you feel you are not so alone including your loved ones.
How many vEDS members live in Australia?
30
3 - 89
Our next support group:
REGISTER YOUR PLACE
Connective Tissue Disorders Network Australia (CTDNA)
We are proud to have a partnership with Connective Tissue Disorders Network Australia (CTDNA) to further support for our vEDS members in Australia.
CTDNA is the national voice, and peak body for people affected by heritable connective tissue disorders (HCTDs), driving advocacy, education, and collaboration.
They are building a national network of lived experience advocates, healthcare professionals and researchers with an interest in HCTD.
A network of like minded individuals coming together to better the care and management of Australians impacted by HCTD.
+441617974746
This support group also have a private Facebook group where you can get peer support from other members in Australia & United Kingdom, click here to request to join the group.
