CLEVELAND — Two years ago this week, COVID hit our area hard, and there have been numerous aftershocks ever since. That includes an uptick in a miserable syndrome that makes people pass out.
“Siera? Siera?” a woman's voice can be heard saying in home video submitted to News 5 Investigators. The desperate mom can only sit back and watch her daughter.
“Many times I’ve come in and found her passed out on the floor,” said Willard resident Donna Hisey about her daughter. “I hate it.”
In the video, you can see Donna’s 20-year-old daughter Siera Hisey. She has just blacked out and her body convulses. It’s a scene that’s been playing out over and over again, with her dog Max by Siera’s side.
“Max, what’s going on with mama?” said Donna in the video. “Did she pass out again?”
“I don’t feel like I’m the same person anymore,” said Siera.
PROBLEMS STARTED AFTER VIRAL ISSUE
Her problems all started after Siera had a viral infection, and then when COVID-19 hit in March of 2020, she got sick. She was never tested but said she could have had COVID early on.
Later that year, Siera got dizzy while she was at work. She went to the hospital.
“They said that vertigo was at Willard, like everyone was coming in with vertigo,” said Siera during a News 5 interview.
“It just breaks my heart because it’s ruining her life. It’s like, she wanted to be a nurse. She can’t do that now. She can’t even hold a job, "Donna said.
After months of tests and no real answers, the Cleveland Clinic finally figured out Siera has POTS.
“POTS stands for Postural Orthostatic Tachycardia Syndrome,” explained Doctor Jeff Courson from Cleveland Clinic. He told us a third to half of POTS patients have had a viral infection before being diagnosed. He said COVID has played a role in the number of recent POTS cases.
“We have seen a huge increase in the number of patients that we are seeing in the Clinic with POTS-like symptoms,” said Dr. Courson.
SEEING IT UP CLOSE DURING OUR INTERVIEW
Other major hospital systems report the same thing. One of the main symptoms is when patients stand up, their heart rate goes way up, causing them to fall out. That even happened in the middle of our interview with Donna and Siera.
Siera described “burning in my legs from here down,” with her eyes closed as she sat on the floor of our interview room. “My heart’s racing like I’m going to have a heart attack.”
Siera ended up passing out a couple of times, and the convulsions kicked in, too.
“The tough part is, for most patients, that recovery takes years," said Dr. Courson.
'STANDING UP TO POTS', RESOURCES AVAILABLE
“My daughter was a normal, happy kid,” said Cathy Pederson during a Zoom interview. She knows how long the struggle can last. She thought her then-10-year-old daughter had Mono. She’s now 20 and still suffering.
“And it changed not only her life but the life of our entire family,” said Pederson. “And so, I’m really a mom on a mission.”
Based near Springfield, Ohio, Pederson started the national non-profit group called Standing Up to POTS, complete with an advocacy website and Facebook supports pages for adults, families and teens.
“Since the pandemic started, we’ve had an increase in our social media presence by about 220%,” said Pederson.
She also told us Standing Up to POTS has awarded more than $300,000 to top POTS researchers around the world, including $100,000 for a Long COVID study last year.
“Historically… the (National Institutes of Health) only spends about $1.5 million a year on POTS research,” said Dr. Courson. “So, the effect on the post-COVID research is going to be tremendous to that POTS population.”
DEALING WITH POTS, HELPING OTHERS
That gives the doctor hope for patients like Siera who wants to help others going through POTS. “Since I can’t make a difference by being a nurse, then I want to make a difference in what I’m dealing with then,” Siera said.
At one point, Siera created a painting that shows how she feels coping with POTS. It’s a vase with a bunch of colorful, beautiful flowers coming out, but at the bottom of the vase, Siera painted the silhouette of a young woman with her arms folded and her head down. The roots of the flowers have words describing her feelings while going through POTS. There are words like “torture,” “useless,” and “hopeless” on her painting.
“You just feel trapped,” said Siera. “So, that’s why I made the girl at the bottom, is because you’re literally trapped in a bottle.”
You might recognize the name Hisey from News 5 Investigators’ reports on the Pediatric Cancer Cluster around Clyde, OH in eastern Sandusky County. Siera is the sister of Tanner and Tyler Hisey, who, as kids, survived that cancer mystery.
When Siera started having her strange symptoms before they knew it was POTS, there was some initial fear that she had some kind of cancer.
The Hisey family has certainly been through a lot.
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