The month of May is Ehlers-Danlos Syndrome Awareness month. EDS is an inherited condition that affects connective tissues in the body. And one local support group is raising awareness about this unknown disease as a way to help others.
In Martinsburg, the Tri-State EDS support group met on Thursday to talk about pain. The group helps those with EDS.
“When I started in 2015, it was just to get the few people in the community that I knew that had this diagnosis too. Literally probably not even five of us and since then our support group has nearly 200 members,” said Ashton Nesmith-Kochera, the founder of Tri-State EDS.
EDS is a connective tissue disorder that affects every part of the body such as ligaments, joints and organs. Kianna Mccutcheon is apart of the Tri-State EDS support group. She says due to having EDS she was home bound the majority of her senior year of high school.
“I could see a difference with the connective tissue pulling apart. Mostly in my major organs. It was harder to breathe. My heart rate would sky rocket and my blood pressure would go so low I would pass out,” said Mccutcheon.
And one of the problems with EDS is that it affects the entire body making it hard for doctors to properly diagnose it.
“We would go to ER’s and they would think druggie or just a girl who has low pain tolerance or they would think things like IBS or anxiety or something like that,” said Mccutcheon.
Nesmith-Kochera ran into a similar problem. She wasn’t properly diagnosed until she was 25 years-old and had periods in her life where she was bed bound. She has shared her story as way to help others.
“For our community it’s been one story after another, one’s family story helping another family story and so on. I’ve lost count of how many people I know who have gotten answers because of my story,” said Nesmith-Kochera.
For more information, visit this website: https://www.ehlers-danlos.com/support-groups-westvirginia/