Pronounced [ee-dee-es-err]

Definition: (noun) an individual born with Ehlers-Danlos Syndrome (EDS).

Word Origin and History of the term EDSer

EDSers United



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EDSers United sincerely thanks Christine Spencer for coining the term "EDSer," for creating the very first social media outlet for EDSers to begin connecting with each other, and for being such a strong and inspirational EDS Advocate. 

Living with EDS provides those born with this rare genetic condition with the opportunity to triumph in the toughest of times. Christine Spencer is an excellent example of the strength, creativity and inspiration that resonates within the EDS community. 

Dealing with some health issues since childhood, and diagnosed with EDS in 1997 at the age of 13, Christine did not have many places to turn to find help with her symptoms from EDS. Her mother relied on books and doctors at the time, as there wasn’t much to the internet just yet. So within about eight years’ time, Christine turned toward the first online social media outlet, Myspace, and created the first social media EDS group. This was an amazing experience for everyone who participated in posting about their perspective. Prior to this platform, EDSers were left to just paragraphs of limited information and felt quite alone in their troubles. Within this group, symptoms were shared, and dots were connected. What hadn’t been documented as a symptom of EDS, was now being typed out one post at a time by each member of the group.

Surely enough, Christine remembers the moment, “I kept tiredly typing “someone with EDS,” or something along those lines. I’ve always had a silly way with words, so I remember hitting the backspace button, and typing “EDSer”. It caught on, and when I came back to social media after quite some time away, I was surprised to see everyone using the word! I always wanted to coin a term, so I guess my wish came true!”

That was over 10 years ago, and in the past few years, Christine has been making waves. Unable to deal with her chronic pain anymore, she knew she had to try something completely different, and give it her all. Even after the doctors urged EDSers not to do yoga, she listened to her gut that said, “There’s something to this yoga!” Adopting a daily, gentle yoga and meditation practice, she overcame her limitations, and found a fountain of well-being within her practice. She took to the internet to find if others had the same experience, but she did not find much on EDS and yoga. So she quickly created the Facebook Page for it, and from there her story continues to grow. 

Christine feels as if she has her life back. “I want to live each day as if it is more important than the previous one. I find so much beauty and depth within my practice, that I feel compelled to share these states with others. If I can inspire anyone to live with such self-expression, then I’m doing my job.”