WASHINGTON — Advocates are on Capitol Hill petitioning for $50 million of funding to research a condition affecting millions more people since the pandemic began.
And it’s a condition most people have never even heard of.
It’s called POTS, which stands for Postural Orthostatic Tachycardia Syndrome. It can leave patients homebound or in a wheelchair. And for most patients, it can take years to get diagnosed.
"I have a pretty severe case so it's just managing the symptoms. It's like I plug one hole and five other holes happen," said Hillary Bauer who has lived with POTS for at least 8 years.
Once active and working in healthcare, the Decatur woman is now on disability, spending most of her days taking medicine, getting infusions and resting.
"There are many days I have to lie down and I can't get up," said Bauer.
The usual triggers for POTS are a concussion or a bacterial or viral infection, like COVID.
The number of people battling POTS has skyrocketed with the pandemic.
Dr. Tae Chung runs the POTS clinic at Johns Hopkins and said there were 3 million POTS patients in the U.S. before the pandemic, and now there are at least 6 million.
Symptoms include light headedness, dizziness when standing, fainting, a racing heart rate, brain fog and debilitating fatigue. It mostly affects women between 20 and 50 years old.
"Maybe 20 to 30% of my patient population are pretty much housebound and they're still in their 20's and 30's," said Chung.
Chung said most of their treatments aim to increase the patient’s blood volume.
"Drinking a lot of water, high salt diets, and some sort of physical rehab," said Chung.
Compression socks can also help.
Lauren Stiles, the president of Dysautonomia International, a POTS advocacy group said the largest barrier right now is getting diagnosed.
"Before COVID, it was an average 5-year diagnostic delay to get diagnosed POTS and the average patient saw seven doctors before they were diagnosed," said Stiles.
It's a delay Bauer knows firsthand. She now helps other patients in support groups find medical assistance and learn ways to cope.
"I used to be a really active person, I ran half marathons, went to the gym. I can barely make it up the stairs now," sad Bauer.
To help diagnose POTS, there are tests using either a tilting table or simply having the patient stand up from lying down. The doctor measures the the heart rate and if there's a sustained 30 beats a minute increase -- the patient could have pots.
More information about the illness is available on the click online.