This Ehlers-Danlos Syndrome Patient is Unifying Others Through Music

According to a story from news.yale.edu, Yale alum Jordan Plotner began experiencing his first symptoms of Ehlers-Danlos syndrome when he was a sophmore. He experienced episodes of brain fog and fatigue that made it practically impossible to leave his dorm room. That year he had to delay two of his finals as a result. It took a long time before he was ultimately diagnosed with Ehlers-Danlos syndrome (which only happened thanks to his own research), but he had actually been dealing with the disorder all of his life.

About Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome is a group of disorders that affect connective tissue. There are several different types which have varied symptoms and are linked to different genetic mutations. These mutations may be inherited or may appear early in a patient’s development. Symptoms can include loose joints, stretchy skin, scarring, pain, aoritic dissection, scoliosis, and osteoarthritis. Vascular Ehlers-Danlos syndrome is linked to mutations of the COL3A1 gene and is characterized by fragile, transparent skin, thin hair, short stature, fragile organs prone to rupture, distinct facial features, club foot, and joint hypermobility. With no cure currently available, the treatment of these syndromes is supportive and based on symptoms as they appear. Surgery may be utilized to aid joint problems, but results are varied. There is a great disparity in the severity of symptoms; some patients are able to lead fairly normal lives, whereas others may be severely affected. To learn more about Ehlers-Danlos syndrome, click here.

A Lifelong Challenge

Jordan used to be an active athlete, but pinched nerves in his elbow and shoulder kept him from throwing a baseball and his knee became dislocated when playing soccer. Both of these symptoms were likely the result of his syndrome. Jordan has focused more recently on creating music to deal with his anxiety. His latest project is a virtual ensemble called The Resonance Project. The music would serve as a sound track to a documentary he filmed about the challenges of living with a chronic illness like Ehlers-Danlos syndrome.

Jordan has invited other musicians with chronic disease to participate. As he continues to receive submissions from chronically ill musicians from around the country, Jordan says that ultimate goal is raise awareness about chronic illness and rare diseases.

“A patient is not crazy just because a doctor can’t identify what’s wrong.” – Jordan Plotner

Interested in participating in The Resonance Project? Click here.


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