Our stories with vascular EDS

Personal Stories

Read, Watch & Listen

Read, watch and listen to personal stories from individuals touched by vascular EDS, sharing their experiences, challenges and insights.

If you would like to share your vascular EDS story 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.

Listen Here

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!

Listen to Part 1 Listen to Part 2

Our Stories

Becky

The day I got the diagnosis I was washing the car in preparation for my trip to Scotland to marry my fiancé Chris.

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Debbie

Debbie Eaton describes her body as a “ticking timebomb” and has bravely spoken out about the devastating illness which has blighted her life and killed her teenage son.
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Alicia

It was on the 24th of August 2013 that VEDS finally became Alicia's reality. We had received the clinical diagnosis a few months earlier and then the devastating phone call to confirm the genetic results.
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Helena

EDS had played a devastating role in my family and my life up to this point. My mum, 29, passed away from an aortic aneurysm when I was 5.
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Ryan

Those who didn’t know him would not have realised was that he lived with a rare life limiting medical condition which finally claimed his life at the age of 17.
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Kerri

"Don't google it Kerri" 4th May 2016 will be etched in my memory forever. I was painting the fence in the garden having finished work for the day.
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Rob

This is my story and there are so many more just like it. It begins on 23 October 2009 when our son, Ryan Luke Eaton died on this day aged just 17 and a half, barely two months after his granddad Bryan.
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Ryan

Well ermm where do I begin? Do I start on how I felt when I found out the news that my four-year-old sister has a very rare condition called Vascular Ehlers-Danlos Syndrome.
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Carolyn

The date was the 13th November 2013, a date etched in my mind forever. We were heading towards Sheffield, a city my family had been to many times.
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Andie

Andie was a Holley High School graduate studying to be a radiologic tech at North Country Community College. But in January 2019, the 20-year-old suddenly died after one of her arteries ruptured.
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Dillon

I know #REDS4VEDS DAY is over but for the families it's never over. We have to fight each and everyday. There are so many families that may be affected by this mutation and not know it.
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Nicki

You have a friend of a friend of a friend who's an A&E Dr. She sees your #reds4veds status, is intrigued to find out more, and looks up Vascular Ehlers Danlos Syndrome.
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Bradley

This picture was taken about a year ago when I had my first of many dissections due to myself having vEDS and at the time not knowing of my diagnosis.
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Annabelle

Annabelle was born three weeks premature on 25th February 2009 weighing 6lb 5oz. We noticed as a baby she bruised very easily and without explanation.
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Chris

Hi my name is Chris and I would like to share my story about how I got my diagnosis and how I'm dealing with it for the rest of my life.
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Claire

I have started to write up my story and also to express my story through my art too.
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Clare

A patient experience of A&E. For every major vascular event I have had, doctors have either tried to discharge me from A&E.
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Mia

After the constant fighting for years for answers, being doubted, being dismissed, I never gave up for Mia.
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Alicia B

“My name is Alicia and I’m 14, I’ve wrote at least 5 times trying to work out what to say but this is how VEDS has made me feel."
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Hayley

"It’s #reds4veds day!! i’m on year 5 of celebrating this day and the people who live every day with this genetic disorder, so let’s chat!"
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EDS - The Raw and Honest Truth

Remembering Natalie

Natalie Paquette tragically passed away to vascular EDS in July 2015. Natalie was just 12 years old. Today (2nd February 2019) is Natalie's 16th Birthday, please join us in celebrating this special day and enjoy watching her videos.