Man with Rare Disease Organizes Musical Ensemble with Other Chronic Disease Patients 

Talk about a bittersweet symphony!

Published on Yale University’s online paper, recent grad Jordan Plotner — who is living with Ehlers-Danlos syndrome (EDS) — organized a virtual musical ensemble with other people living with chronic disease and disability.

As Yale News put it, it’s all about making art out of pain!

What is EDS?

Ehlers-Danlos syndrome is a group of inherited disorders of the body’s connective tissue.  These disorders affect the supportive connective tissue of the skin, bones, blood vessels as well as many organs and body tissues.

There are different types of EDS which are defined by their symptoms. It is estimated that 1 in 2,500 to 5,000 people have EDS worldwide.

To read more about EDS, click here.

Out of Pain, Art

As Yale News writes, Jordan’s first real brush with his EDS symptoms during his sophomore year at Yale, when he felt overcome by a brain fog. A membrane surrounding his spine and brain had ruptured, causing cerebrospinal fluid to leak and his brainstem to compress against his skull.

Finding his diagnosis took some time and effort.

I knew from the beginning there was going to be a level of difficulty in figuring this thing out,” Jordan said. “I had seen many doctors and most of them attributed my pain to my workload and stress. It became my mission to prove that something was physically wrong with me.”

Jason began researching, reading scientific papers online, emailing his doctors whenever he discovered a promising lead. He zeroed in on disorders related to the spine and brain.

But when he wasn’t on the hunt for his diagnosis — he immersed himself in his music, composing in a mini studio he had set up in his dorm room that featured a keyboard, speakers, microphone, guitars, and toy instruments — a train whistle, a slide whistle, and clappers.

Whenever I was not feeling well or feeling anxious, I used work to get myself out of it,” said Jordan. “That is my coping mechanism.”

He furthermore threw himself into other creative pursuits, like writing a screenplay and getting into innovative engineering.

But finally… countless inconclusive medical tests and doctors’ visits later, he was diagnosed with EDS.

‘The Resonance Project

Finally armed with a name for his condition, Jordan turned back to his creativity. Using his GoPro camera, Jordan worked on a documentary about his life with a rare, chronic disease.

He also processed his experiences into a new piece of music he wrote for orchestra and voice — a virtual musical ensemble he called The Resonance Project — that would become the centerpiece of the film.

Through his website, he has invited other musicians with chronic disease and disability to contribute to this virtual ensemble, with downloadable sheet music for instruments ranging from piano, to tuba, to piccolo and double bass, as well as lyrics, and directions for uploading their video clips.

“With this project, all of my emotions and what I am feeling physically and emotionally is part of what I’m creating,” Jordan said. “And if I can help someone find a diagnosis and be spared what I went through, it will be worth it. This is about raising awareness not just for EDS, but all rare diseases.”

Check out the trailer!

Thank you, Jordan for sharing your experiences and for your creative effort!

To learn more about the The Resonance Project, click here!


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