CanaryPod: Topple Uncaged – Antonia’s story, part one

THIS PODCAST CONTAINS LANGUAGE AND CONTENT SOME PEOPLE MAY FIND OFFENSIVE AND UPSETTING. THE VIEWS EXPRESSED IN THIS EPISODE ARE THE OPINIONS OF THE HOST AND GUESTS. THE GUESTS GAVE THEIR FULL PERMISSION FOR SHARING THIS INTERVIEW.

Welcome to series two of #ToppleUncaged!

Every week, The Canary will be bringing you an innovative podcast for the media landscape; hosted by me, Steve Topple.

In the first of two special episodes, I meet Victoria Cheney, mother of Antonia Payne-Cheney.

Antonia’s story

Her daughter’s story about battling chronic life-threatening illness, the NHS and the state is remarkable. It is one of hope, trauma, resilience and a family’s love.

I spoke to Victoria at length about Antonia’s journey and her current situation. She went from being an outgoing, active teenager to almost dying several times. Along the way were countless diagnoses and, what they both feel is clear medical neglect. You can listen to the first part of my exclusive interview below.

Continue reading to find out more about Antonia’s illnesses and her situation.

Listen on iTunes here.

A chronic illness

Antonia lives with hypermobile Ehlers-Danlos syndrome (EDS). The syndromes are a group of connective tissue disorders. This means that a person’s collagen is defective. Collagen supports nearly everything in the body to keep it in place: eyes, bones, muscles, organs and so on. But in a person living with EDS, the collagen doesn’t work properly.

Imagine a bungee rope that doesn’t spring back up. Or a hairband that isn’t taut. Maybe think of wallpaper peeling off the wall; the paste stretching out as it collapses. That’s what EDS is like. Most parts of a person’s body are not held in place correctly – so none of them works the way they’re meant to:

Countless symptoms

Many people living with any subtype of EDS are hypermobile. But hypermobile EDS is also one of these subtypes. This in itself presents numerous problems; not least chronic fatigue. I’m not talking about the ‘fatigue’ that energy drinks manufacturers bandy around to sell their products. That’s not fatigue; that’s too many late nights. Fatigue for many people living with EDS feels like the worst bout of the flu. You literally can’t move your body for the pain, and your brain can’t think for the fogginess.

Other common symptoms include (but aren’t limited to):

• Easy bruising and scarring.
• Constipation/diarrhoea.
• Bacterial infections in the stomach and gut.
• Subluxations/dislocations.
• Joint pain.
• Vitamin and mineral deficiencies.
• Cognitive impairment.
• Lack of spatial awareness.
• Visual impairments.

There’s a notion that somehow EDS is rare. But as nutritionist Lisa Jamieson points out, that’s not really the case:

This is exactly why we need to stop calling it 'rare' – it's not rare, just rarely recognised and rarely diagnosed. #EDS #EhlersDanlos #HSD #NotRare https://t.co/JfWY7WlrHx

— Lisa Jamieson (@LoveInY