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.

The VEDS Emergency Pack has been designed to give you the resource and support to help you advocate for yourself or someone you care for in the event of a medical emergency or routine appointment.

The contents of this pack have been developed from the lived experience of people who have vascular EDS when accessing emergency care:

• Personalised details, next of kin, Medicare number.
• Emergency Information for Medical Professionals.
• Emergency signs and symptoms.
• GP medical summary letter template.
• Care Team template.
• Patient Self-Advocacy advice.
• Emergency Preparedness.
• Access to emergency information available in 16 languages.
  

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!