TORRINGTON — Tracy Blaisdell is 48 years old. She’s engaged and has two grown children and, for a number of years, she lived what could be considered a normal life.
But at some point, that changed.
Blaisdell suffers from Ehlers-Danlos syndrome, a debilitating group of genetic disorders that affect the connective tissues throughout her body.
Connective tissues are responsible for supporting and structuring the skin, blood vessels, bones and organs, according to ehlers-danlos.com, a site devoted to the syndrome and its many forms. It’s made up of cells, fibrous material and the protein collagen.
Blaisdell wants the medical community to educate itself more thoroughly on the syndrome, to understand it and help those afflicted by it.
“I have 38 different diagnoses because of the syndrome, and every time I get a test done, I get a new diagnosis,” Blaisdell said. “Eighty percent of our bodies have collagen, and when you’re talking about 80 percent of the body, it’s just endless, what can happen and what can go wrong.”
Since she was first diagnosed with EDS in 2015, Blaisdell has visited numerous doctors and received different opinions on what’s wrong with her. Her ailments, as a result, range from scoliosis, a curvature of the spine; to gastroparisis, in which the stomach can’t digest food normally; COPD, a complication of emphysema; and jackhammer esophagus, which affects a person’s ability to swallow.
She’s also had numerous surgeries: a hip replacement, shoulder replacements, a cervical fusion, toenail removal, gall bladder removal and rotator cuff repair.
The surgeries are the result of the deterioration of her connective tissues. Blaisdell always has been hypermobile, or double-jointed.
“I’ve been hypermobile my whole life — I was a cheerleader and I did a lot of athletics,” Blaisdel said. “I wasn’t diagnosed with EDS until I was 42.”
Blaisdell’s hypermobility allows her to turn her feet nearly backward, for example. Her shoulders were affected by the ease of movement when she was young, and resulted in surgeries to repair the ongoing damage. EDS has left her exhausted, often unable to sleep, and on a constant search for relief from the pain. She is now using medical marijuana, after deciding to avoid opioid pain medications.
“Before a lot of work was done to get EDS out in the open we were called hypochondriacs, because nobody could figure out what was wrong,” she said. “It consumes every part of you.”
Blaisdell’s mother had many of the same problems, and also was hypermobile. “We think we got it from her,” Blaisdell said, referring to her older brother, who also has the syndrome. “She’s had knee replacements, hip replacements; so she’s had a lot of problems, too.”
She recently bought a scooter to get around, because walking is so painful. “I raised $900 on a GoFundMe fundraiser, and I was able to get one,” she said. “I was looking at a more expensive scooter, but this one works pretty well.
“I am pretty much a shut-in,” she said. “I go to the doctor and the grocery store, but that’s pretty much it.”
After suffering with shoulder pain for years, Blaisdell ended up in the emergency room in Torrington, and met a retired orthopedist who knew what she had.
“He was the first to diagnose me, and he’s been a doctor for 30 or 40 years,” she said. “He’s wonderful. I got confirmation diagnoses from three other orthopedic doctors and physical therapists, but it was hard to find the right one.”
Most recently, Blaisdell became a patient of Dr. Stacy Taylor, a member of Hartford HealthCare Medical Group Primary Care in Torrington. Taylor could not be reached for comment.
“She’s absolutely great,” Blaisdell said, adding that she also gets plenty of support from her fiance, Chris Matava. “He’s the only one working, and we’re doing our best to get through this together,” she said.
Her daughter, Hailey, 21, lives in Winsted, and is one of Blaisdell’ caregivers. She also has a son, Cameron, who lives in Iowa.
“I believe Hailey might have EDS, too,” she said. “She’s dislocated her knees a bunch of times, so that’s a real concern. I worry about everything.”
One aspect of EDS is that it often strikes when a person goes through a traumatic physical event. She belongs to a support group on Facebook, and shares her experiences and problems with other members.
“Some will say it started after a car accident; mine came on after menopause,” Blaisdell said. “All of us who have the condition talk about it, and we’ve all said it seems to happen that way, but there’s nothing in the textbooks that say that. It just seems like suddenly, the body is having all these problems.”
Blaisdell stressed the importance of people understanding what EDS is and what it does.
“Imagine a rubber band that, as it ages, it dries out and shreds,” she said. “That’s what’s happening to our connective tissue, it’s ripping and shredding from overuse. Because I’m hypermobile, just keeping my body the same as a normal person is very difficult.”
People with EDS call themselves “zebras.”
“If you’re walking down the street and you hear hoofbeats, you think it’s a horse, right?” she said. “But you turn around, and it’s a zebra — and you’re shocked. It’s not what you expected. That’s what this feels like. We are in a different group.”
She was fitted with a heart monitor last week because she was experiencing heart palpitations and low blood pressure.
“My father’s father died of a heart attack, my uncle has had a heart attack, and my father has an aneurysm,” she said. “I haven’t had any issues with my heart until now, and the doctor wants to keep and eye on it. I always say, my heart’s the only good thing in me.
“I joke a lot, but what else can I do? I have to,” Blaisdell said. “Instead of crying, I laugh. It helps me get through.”
Her advice to anyone suffering a debilitating medical problem is to become their own health advocate. “Ask questions,” she said. “Talk about it. I want everyone to be talking about EDS. It’s not new, it’s been around since the 1700s. But it’s not recognized the way it should be.”
To learn more about EDS, go to www.ehlers-danlos.com.