EDS - The Raw and Honest Truth

‘EDS: The Raw and Honest Truth’ is a poignant and inspiring documentary that provides an intimate look into the lives of individuals living with Ehlers-Danlos Syndrome (EDS), a group of rare connective tissue disorders that often go unseen and misunderstood. Through powerful personal stories, the film explores the daily challenges faced by those with EDS, from chronic pain and joint dislocations to the emotional toll of an invisible illness that is frequently dismissed or misdiagnosed.
The documentary features candid interviews with a diverse group of individuals who share their journeys of struggle, resilience, and hope. Their stories are not just of suffering but of courage and determination as they navigate a world that is not always accommodating of their needs. Interwoven with these personal narratives are insights from leading clinicians and experts in the field, who shed light on the complexities of diagnosing and treating EDS. These medical professionals discuss the broader implications of living with an invisible illness, including the stigma that patients often face, and the need for greater awareness and understanding within the medical community and society at large.
‘EDS: The Raw and Honest Truth’ is more than just a documentary; it is a call to action. It urges viewers to rethink their perceptions of invisible illnesses and to empathise with the unseen struggles of those living with EDS. By highlighting both the pain and the perseverance of its subjects, the film ultimately delivers a message of hope, emphasising the importance of advocacy, support, and compassion in the journey toward greater recognition and better treatment of EDS and similar conditions.

[@tornadotigger]

Thank you to everyone who took part and produced this film. ❤

[@abigaillewisphotography]

I’ve shared this everywhere this morning! As someone living with EDS I could relate to something everyone said in this video. Thank you for making such an in-depth look at EDS 🖤

[@kurukulle5294]

From the first time I presented to A and E with a joint subluxation, to getting a formal medical diagnosis of hypermobility, took 33 years. I'm now having genetic tests as I have symptoms of one of the rarer types. Thanks for making this moving film. I was struck by the unusual demographic of so many medical students with EDS.

[@rebeccajennings9242]

Brilliant insight into a terrible disease. Proud to say I know some of the people in this film, this is outstanding. Well done xx

[@RobinPalmerTV]

I experienced a spinal CSF leak which is a type of headache more prevalent in the EDS/HDS community. Thankfully Dr Simon Ellis and his team at UHNM got me fixed and my symptoms all vanished including many of my EDS symptoms too. Forever thankful. It’s a pity there was no mention of autism and adhd which virtually all people with symptomatic joint hypermobility experience including marfans patients. Please remember hEDS and HSD are incredibly common whereas the other types are not.

[@sylviacg8296]

thank you for making this. Very important do teach and spread the word on EDS

[@Cate3923]

Thank you ❤

[@Becsbeasties]

I feel this is so true, just because they don't understand it they fob you off! Surely just to know who to send these patients too ❤

[@andreaandersson5901]

🙌🏼🙌🏼🙌🏼♥️♥️♥️

[@Becsbeasties]

The only way I have found I could get any diagnosis and care is private, I'm disabled and I can't afford it 😢

[@jenigill7320]

Amazing documentary - As someone that lives with EDS I can 100% relate - thank you so much for sharing 🤍🖤🦓

[@AllstarTiger]

I hate the comments of its in your head, or its because you are over weight. Ive been suffering since I was a baby and was finally taken seriously at 21 and now I am nearly 36 and its taken my life away.