COLUMBUS, N.C. (WSPA) – At 21-years-old, Lindsey Stechshulte has had to restart her life because of a rare illness called Postural orthostatic tachycardia syndrome, or POTS.
POTS is a condition that affects blood circulation and can cause symptoms that include: lightheadedness, fainting, and rapid heartbeat.
Since 2018, POTS symptoms took over Stechshulte’s daily life.
Her mother, Stacey Evans, said Stechshulte was her eldest happy, healthy and smart daughter.
“She called me one day from school and said ‘I passed out.’ I said, ‘Well you’re probably getting sick. Get some rest, drink lots of fluids.’ You know? Then she just never stopped passing out,” Evans said.
“I was passing out three or four times a day and I didn’t know why. None of the doctors knew why,” Stechshulte said.
POTS is a rare disease, commonly affecting women between ages 18 to 23-years-old, AnMed Director of Cardiac Electrophysiology Dr. Rick Henderson explained.
“Life doesn’t end but it’s a battle everyday. Every patient that I encounter with this, I tell them this, ‘If you’re not now you’re going to become frustrated.'” Henderson said.
The illness confuses the body’s autonomic nervous system, Henderson added.
Thus, the body’s normal regulations that aren’t consciously controlled: heart rate, blood pressure, digestive tract and body temperature are affected.
“Before POTS, I was a nursing major. I was actually just accepted into the upper division nursing program at UNC Charlotte and I was so excited. I wanted to be a nurse since I was in eighth-grade,” Stechshulte said.
Unfortunately her continual fainting forced her to quit school, her job and ultimately move back home. She said this caused her to grieve for a life she had to put away.
“I went through all the stages. At one point, I called my dad and I was like, ‘Please just take me back to school,'” Stechshulte said. “He said, ‘I can’t do that.’ “
While she bargained, her mother grew angry.
“It’s her life and I want her to have everything she wants in life. It’s gotten taken away from her,” Evans said.
But over the last two years, she’s been able to gain some of it back piece-by-piece.
Stechshulte said she found people who understood her through Facebook, since no one in the area really understood what she has going through.
“I have people to go to ask questions. I can answer questions that I know the answers to, and that really helps me feel like I’m a part of that community,” Stechshulte said.
She’s also found medications to help manage her POTS symptoms. This turned her fainting from three to four times a day, to three to four times a week.
Her less frequent fainting spells have allowed her to go back to school. She is now majoring in education.
“I kinda just want to be able to live my life and continue on as somebody who can continue on,” Stechshulte said.
Her most recent potential treatment, a service dog, is what she hopes will give her full independence.
“That is actually a fabulous intervention because that every day battle is going to be shared now with a therapy,” Henderson said.
The dog will be able to warn her when she’s about to faint. It can sit with her if she has fainted, and help pick up dropped items that could potentially cause a fainting spell.
But there’s a catch, Stechshulte has had to raise close to $20,000 for the service dog from Medical Mutts in Indianapolis, Indiana.
Service and support animal advocates, Brad and Veronica Morris, said Stechshulte’s treatment parameters aren’t uncommon.
“There’s so much more demand than there is supply. What you have is a lot of people looking for programs,” Brad Morris said. “You just really can’t meet the need.”
Morris said the danger of scams or inadequate trainers is what people looking for an animal companion, have to watch out for.
Brad noted there are are three different types of helpful animals:
- Service animal – an animal that has been trained to perform specific tasks that assist those with disabilities, medical or mental ailments.
- Therapy animal – an animal that has been obedience trained and screened for its ability to interact favorably with people and/or other animals.
- Emotional support animal – a type of assistance animal that alleviates symptoms or effects of a person’s disability.
None of these animals are initially considered pets. They’re part of a person’s treatment similar to a wheelchair, crutches or cane. Therefore, it’s not wise to pet or try to play with these animals because they’re working.
The Morris’ non-profit, Psychiatric Service Dog Partners, is geared at helping people learn the different types of helpful animals and pick the right one for them.
Veronica Morris, who has a PhD in Environmental Science Policy & Management, said the process for getting a service animal can be very long.
She said people can go the way of Stechshulte, who found a service that trains the dogs how to medically respond to the person. Or, she added, the other option is train the animal yourself.
The process can also be very expensive, since no type of insurance companies will cover the cost of service dogs.
Morris said she battles anxiety and panic attacks. She said all of the stress and money for a service dog is worth it.
“Fifteen years into my service dog journey, I can drive. Something I couldn’t do for over 10 years. I can drive myself to the grocery store. I can do my grocery shopping with my little Hestia by my side,” Morris said.
Stechshulte and her family began selling calendars in January to help raise money, as well as hosting fundraisers.