When people accuse McKenna Hurley of pretending to be sick to get attention, she scoffs that she wouldn’t have picked some obscure ailments as the source of her problem.
“If I was going to make up an illness, I’d make up something people could understand,” she said.
The 19-year-old Spotsylvania County woman has what a medical website calls a “trifecta of weird diseases” which bring on a variety of painful problems. Her joints are prone to dislocating, and her ligaments get torn in the process.
If she stands up too long, blood pools at her feet, and she gets woozy and starts to babble. But even if she’s sitting still, her heart sometimes races and her hands sweat—as if she’s running a constant marathon, said her mother, Regan Hurley.
Blood cells in her body often go on the attack, as if she has a food allergy, but there’s no consistency in what triggers the reactions.
“She may look perfectly normal, but she’s absolutely not,” her mother said.
Having a trio of invisible illnesses can bring on dirty looks and unpleasant comments. Before she graduated from Riverbend High School in 2018, she had a pass to use the elevator—yet others accused her of faking an illness because she was too lazy to walk.
Hurley’s gotten the same reaction when she’s parked in a handicapped space—she has the required placard hanging from her mirror—or when she’s with her family at a theme park and needs a wheelchair.
“I would rather people ask me why I need a wheelchair instead of just assuming I stole it from my grandma,” Hurley said. “Just because I don’t look like I’m in pain right now, I am. I just hide it.”
‘SHARP AND TEARING PAIN’
Hurley had all the markings of a normal teenager as a cheerleader, model and member of a travel soccer team. All that changed one day in 2014, when she collapsed while running down a soccer field.
Both knees had dislocated.
She laid still for a while, and the joints went back in on their own. But the process kept repeating, and it wasn’t just the knees that went out of place. Shoulders and elbows, hips and fingers did the same.
“It’s obviously painful,” she said, “like a sharp and tearing pain.”
She didn’t have to be doing something rigorous, like running. Her knees would dislocate if she got up out of a chair or put her pants on, her mother said.
After 2½ years of doctor visits, Hurley was diagnosed with Ehlers–Danlos Syndrome, a rare condition that affects the connective tissues in her body. It impacts collagen, the protein that provides the structural support for connective tissues such as cartilage, tendons, bones and ligaments.
Her collagen doesn’t have enough stickiness to provide the needed elasticity, and that’s why her ligaments tear. She’s had 19 surgeries to correct the damage, mostly in her knees, using tendons from cadavers.
The fix lasts for a while, but when Hurley’s collagen mixes with that from the donor, the ligament loses its flexibility and tears again.
“I have a ton of scars,” Hurley said, particularly in her knees which look like they’ve been peppered by shrapnel.
‘I WAS DYING’
The second part of the weird trifecta is postural orthostatic tachycardia syndrome, a more common condition that causes her heart rate to skyrocket for no apparent reason. When “it’s really bad,” Hurley suffers with palpitations, severe headaches and vomiting.
If she stands too long, the blood goes to her feet instead of being pumped back to her heart and up to her brain, and she jumbles her words and stutters.
“She thinks she’s talking normally, but she’s making no sense at all,” her mother said.
Hurley gets weekly IVs of saline solutions in an attempt to normalize her heart rate, but she doesn’t absorb fluids or salt properly. She’s supposed to drink 100 ounces of water daily, but can’t because she also suffers from gastroparesis, a condition in which the stomach doesn’t empty normally.
It’s not related to Ehlers–Danlos, but is problematic, just the same.
The third leg of the trifecta is mast cell activation syndrome, an immune system issue in which the body inappropriately releases chemical fighters, such as histamines. Her face swells and turns red as if she’s having an allergic reaction, but there’s no consistency in what triggers the reaction.
She discovered that one day at the dentist when she was given laughing gas as a mild sedative, just as on other occasions. She could feel her eyes rolling back in her head, but she couldn’t lift her hand or speak until she was revived after receiving oxygen.
“I definitely thought I was dying,” Hurley said.
A 2016 article posted on the Ehlers–Danlos Society website noted the same odd combination of symptoms and diseases as Hurley’s and called them a weird trifecta. They’re “so obscure that many doctors have never even heard of them,” said science writer Kate Horowitz.
She referenced research that year that suggested a genetic mutation may link all three conditions.
Hurley has a cousin on her father’s side who also has Ehlers–Danlos Syndrome, but not to the same degree.
Because the illnesses are so unusual, finding treatment has been almost as difficult as finding a little understanding. Hurley qualified for Medicaid because of the extreme costs of surgeries and treatments, and she visits doctors from Northern Virginia to Richmond several times a week.
Doctors in other states specialize in the trifecta, but have told Hurley her case is too complex or her Virginia Medicaid isn’t accepted.
She tries to live some semblance of a normal life. She had dreamed of being an emergency-room nurse and earned a four-year scholarship to Eastern Mennonite University in Harrisonburg. She had to return to Spotsylvania after a few months because of her health, and realizes she doesn’t have the stamina to work in a hospital.
She takes a few classes at Germanna Community College and studies online. Because the physical activities she enjoys are out of the question, she focuses on going to movies or painting at home.
Hurley does her best to stay positive, even though she literally can’t move without triggering one problem or another. But her mother, who works with stroke victims at a rehabilitation facility, won’t let her lie in bed, because she’s seen the negative impact that has on the body.
Her friend, Andre Hannum, said he doesn’t know how she keeps up a good attitude.
“She handles it extremely well, regarding the circumstances,” he said. “I don’t think any normal person could do it.”