Aimee Haller Follis hardly knew anything about toxic shock syndrome before she nearly lost her life because of it.
Besides reading the standard warning that comes on every box of tampons, Follis, 37, told PEOPLE she hadn’t really heard anything about TSS since grade school, and assumed it was “kind of an old wives’ tale.”
But in May 2017, Follis spent 11 days in the hospital after contracting TSS, an incredibly rare disease that occurs in only 1 out of every 100,000 people, but can can cause organ damage, shock, and even death in 50 percent of cases, according to the CDC.
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Follis told PEOPLE she first noticed something was off about her health after moving to a new house in May with husband Matthew and her two boys — James, 5, and Luke, 3 — but at the time she chalked it up to run-of-the-mill exhaustion. Even when she developed a fever a few days later on May 4, Follis still wasn’t concerned, thinking she had most likely come down with the flu.
However, once her fever spiked to 104.2 degrees the following night, Follis knew there was something more serious going on — but she still decided not to seek medical treatment right away.
“Quite frankly, like most women, especially moms, you kind of worry about everybody else and put yourself second,” she told PEOPLE, explaining that she “didn’t want to go to the emergency room on a Saturday night” and thought she’d “tough it out until the morning.”
She also said that she didn’t think much of her fever at the time because “I have two little boys who get high fevers and ear infections all the time and have been fine.”
“Now I’ve learned that adults shouldn’t have that high of a fever,” she added.
But when Follis woke up on Sunday morning, her situation had turned from bad to worse.
“I woke up, and I had trouble walking and I was vomiting,” Follis told PEOPLE, adding that her fever had climbed up to 105.6 degrees. After getting discharged from a nearby urgent care center, Follis and her mother “immediately went to the emergency room,” where doctors quickly realized she was septic and had an infection in her cervix.
But the doctor’s didn’t have such an easy time figuring out what had caused the infection. After two hours of tests and intensive questioning, somebody though to ask whether Follis could be suffering from TSS, after which an OB-GYN was called in to perform a physical exam.
Although the OB-GYN confirmed that TSS had caused Follis to go into septic shock, she says doctors never “found any remnants of a tampon.”
“They have an educated guess that it was from a tampon, although one was never found. Because the infection was in my cervix and I had recently had my period [and used tampons.]”
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After Follis found out she was suffering from TSS, she still “had no idea what that meant,” nor did she realize “how serious it really was,” but during her first 48 hours in the hospital, doctors “told my family to fly in” because they weren’t “sure whether I was gonna make it through.”
“Through that first night I was admitted, my fever was still so high, and I was packed in ice, and I was freezing, but they couldn’t put blankets on me because they didn’t want my fever to raise any more because they were afraid I was going to have a seizure,” the mother of two explained.
So for the entire night, her parents, husband, cousin and one of her brothers rubbed her hands and feet — which were the only parts of her body that were exposed — to try and keep her warm.
“That was probably the worst day of my life,” she said.
After four days in the ICU — where she went on to lose her vision after being pumped with so much fluid — doctors told Follis she “was out of the clear as far as possibly dying,” but couldn’t say whether she would make full recovery.
In an effort “to not overwhelm my parents and husband,” Follis’ best girlfriends created a Facebook page for her called “Inspiration for Aimee,” which allowed Follis to receive “countless messages and pictures of support” throughout her stay in the hospital, even though she wasn’t allowed to have that many visitors.
“I looked forward to all of their loving and supportive messages, and they truly lifted my spirits and kept me going,” she continued. “If it weren’t for my family and friends, I truly don’t think I would be here today.”
Although the next 7 days in the hospital were full of their own problems, on day 11 of her stay, Follis was discharged “without being on any medicine whatsoever” — and without “real guideline” about when she could expect to feel normal again.
Following her release from the hospital, Follis couldn’t drive for a month, had trouble sleeping, and then the skin on her hands, feet, and “around my eyes” began to peel off. Two months later, her hair began to fall out in clumps, and she eventually lost 50-60% of her hair.
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Although she had been warned by her primary care doctor that these side effects were possible, Follis said “no one could tell me it it was ever going to stop.”
Her primary care doctor also explained why she was continuing to feel side effects of TSS, even though she had been home from the hospital for a while.
“He basically just said, how quickly this infection comes on is essentially how quickly it can leave your body, but because of that, your other organs are the first things to repair themselves and your tertiary type things, like your skin and your nails, or your hair are the last. Because they’re not as important to your body, that’s why there’s such a delayed reaction,” she added.
While Follis said her hair stopped falling out and began to grow back at the end of 2017, in September she and her husband got some happy news: they were pregnant.
“We wanted to have another baby, but we ceretainly weren’t planning it because of the year that we’d had,” she said.
But about 10 weeks into their pregnancy, Follis suffered a miscarriage.
Although doctors said there wasn’t a medical link between her TSS and the miscarriage, Follis said she felt like it was her body’s way of saying it still needed time to recover.
RELATED: What Toxic Shock Syndrome Survivor Lauren Wasser Wants Women to Know About Tampon Safety
As she continued to recover from TSS, Follis said she felt “isolated” because not only did it feel like “nobody else had been through this,” but some people who had the disease went through “even more tragic experiences than I did” she explained, referencing Lauren Wasser, the model and activist who lost both of her legs to the disease.
Asked what she wants others to know about TSS, Follis explained that people should “pay attention” to their bodies because timing is important when it comes to sepsis.
“You can be essentially fine and several hours later you can be dead,” she remarked, adding that she had been told if she “had gone back to bed and waited another hour to come in, then I wouldn’t have survived.”
She also encourages those who have dealt with TSS to share their stories.
“I’ve had so many people reach out, strangers from all over the country and even other the world to say, ‘I knew somebody who had this story, thank you for sharing’ or ‘I had no idea.’” the mother of two said, adding that before her own experience with the disease, “I had no idea either.”
In fact, Follis didn’t think to share her story until she happened to see a TV special about TSS survivor Audrey Leishman — wife of professional golfer Marc Leishman — and her Begin Again Foundation.
“She was talking about her battle three years ago and it was almost like I was looking in a mirror,” Follis said. “I was so moved and so touched by it that I immediately called the organization and said, ‘this same thing happened to me — what can I do to help and raise awareness?”
“If it weren’t for someone else sharing their story, I would never have been able to share mine,” she said. “If I can help save somebody else, that’s what I was meant to do.”