Personal Stories
Read, Watch & Listen
Read, watch and listen to personal stories from individuals touched by vascular EDS, sharing their experiences, challenges and insights.
We also share tributes with the permission of loved ones who have lost someone to vascular EDS.
If you would like to share your vascular EDS story or memorial please click here.
Front Line Genomics. In the latest Patient Perspectives by Front Line Genomics, we are joined by Jared Griffin, the Founder and CEO of Annabelle’s Challenge. In 2012, Jared's daughter Annabelle was diagnosed with vEDS, a rare connective tissue disorder, which led him to launch the charity in 2013.
In our chat, Jared discusses what the journey was like to get a diagnosis, what it has been like starting a charity from scratch and the exciting projects that are upcoming.
Stories From Bromley | Mia & Bonnie and The Mayor of Bromley. Mia and her mother, Bonnie, share their story in a conversation with the Mayor of Bromley, detailing the fundraising work they have done for their charity, Annabelle's Challenge, to help raise awareness of vEDS.
One mum's story of courage and perseverance. Emma Watterson's daughter has an extremely rare life-threatening illness which makes play almost impossible and socialising difficult. She tells Beth and Christy more on Manx Radio.
Podcasts
The Rare Disease Podcast4Medics. For this Medics4RareDiseases episode, Lucy speaks with Bonnie Jackson who is the London Regional Coordinator at Annabelle’s Challenge.
Her daughter Mia was diagnosed with Vascular EDS in August 2021 after 7 years. Mia is now 9 years old and in 18 months both her and the charity have raised over £62,000.00 for Vascular EDS research and support, with lots more events in the pipeline.
Bonnie shares her journey so far and how she has been supported by Annabelle's Challenge Vascular EDS Charity.
The Humerus Nurses Podcast. 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!
Our Stories
EDS - The Raw and Honest Truth
In Memoriam
In memory of our loved ones sadly lost to vascular EDS
