All That You Can’t See: Living with Ehlers Danlos Syndrome

Posted on August 24, 2019 by

300 Comments

If I’d have had to write my final university project two years ago, when I was part of the class of 2017, I couldn’t tell you what I’d have written about, since going back to university I always knew that I wanted my project to focus on chronic illness, although it may seem like an obvious choice. Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome and Chronic Fatigue completely changed the course of my degree and my life. But wanting to use my artistic skills to create a piece based on this doesn’t just come from the fact I have these conditions, It comes from the passion to help others and spread awareness so other people don’t have to face the difficulties in diagnosis, treatment, management and social interaction that I and so many others have faced.

The aims of my project revolve around my desire to establish a deeper understanding of the complexities of living with a connective tissue disorder such as EDS which affects multiple systems in the body. I wrote several different versions of plays that I hoped would give a greater understanding of EDS, but although they were well received by people with the condition and those who know me and my journey well, they were not coming across with those with less understanding and my main goal with this project was to raise awareness within a wider audience. And in playing real clips of interviews I’d done I got the desired response from both audiences and this is when I decided that a documentary style format was going to be more appropriate.

I worked very hard on this piece over many weeks. I am so proud of it and the feedback it’s received. I’m very pleased to say that it achieved a first at university. But this project was never about the final grade for me, it was about raising awareness and giving people an insight into all that you can’t see about someone living with Ehlers Danlos Syndrome. Please share it far and wide.

I’m very proud to present my radio docudrama: All That You Can’t See

[youtube https://www.youtube.com/watch?v=ENuOE-C9WJs]

All That You Can’t See

Living with Ehlers Danlos Syndrome

A Radio DocuDrama Produced by Jenni Pettican

Presented by: Tom Rowntree, Verity Hodgson-Bajoria & Shem Jacobs

Dr Edvard Ehlers Played by: Markus Dalum Tilds

Dr Henri Alexandre Danlos Played by: Jacob Simmons

Huge Thank you to my wonderful dazzle of Zebras for sharing their stories:

Kilynn, Georgia, Sydney, Rachel, Shannon, Stacey, Catie, Brittany,

Rachael, Amy, Poppy, Kim, Laura, Gemma, Cosima,

Martin and Carol.

Please donate to my All That You Can’t See Fundraiser so people can get the awareness, understanding and treatment they deserve.

To Find out more about Ehlers Danlos Syndrome & Hypermobility Spectrum Disorder please visit:

Ehlers-danlos.org and Ehlers-Danlos.com

To find out more about Jenni and her fellow EDSers please visit:

Youtube.com/c/ChronicallyJenni

 

If you’d like to support my content please consider taking a free trial of Audible Audiobooks.

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