American model Lauren Wasser first developed toxic shock syndrome in 2012, when she was 24 years old. That year, she had to have her right leg amputated. And on Wednesday, Wasser told the Washington Post, she expects she’ll “inevitably” need to have her other leg amputated as well.
Recently, Wasser has used her platform to warn women about the risks associated with tampons.
Here’s what she wants other women to know about the condition:
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Toxic shock syndrome is real — and it can be deadly.
Following her first amputations in 2012, Wasser’s girlfriend, photographer Jennifer Rovero, began a therapeutic photo series that helped Wasser find strength, again.
“While we were shooting, we often asked young girls if they have ever heard of TSS or if they believed that it's real,” she wrote in an InStyle op-ed last month. “The majority of them said no."
According to the Mayo Clinic, TSS may be rare, but it’s a potentially life-threatening complication of certain types of bacterial infections, often caused by toxins produced by Staphylococcus aureus (or staph) bacteria.
The condition is primarily associated with the use of tampons, specifically super-absorbent ones that have long been off the market, but it can affect anyone, including men, children and postmenopausal women. Those with a skin or wound infection may be at risk.
TSS from staph bacteria has a mortality rate of between 5 and 15 percent. The rate jumps to 30 to 70 percent for TSS associated with strep bacteria.
Educate yourself about TSS signs and symptoms — and treatment.
Raising awareness and encouraging others to educate themselves has been key to Wasser’s advocacy.
Possible signs and symptoms of toxic shock syndrome, according to Mayo Clinic:
- A sudden high fever
- Low blood pressure (hypotension)
- Vomiting or diarrhea
- A rash resembling a sunburn, particularly on your palms and soles
- Muscle aches
- Redness of your eyes, mouth and throat
If you’re concerned you’re at risk, immediately see your doctor. Because TSS can affect multiple organs, you will likely undergo multiple tests, including a CT scan or chest X-ray.
Treatment may include antibiotics, blood pressure medication, fluids for dehydration, dialysis (if your kidneys fail), surgery to remove nonliving tissue from infected areas or to drain the infection.
Women need to be aware of what they’re putting in their bodies.
Wasser wants women and young girls to know about the dangers tampons can have. Aside from the TSS fine print buried on the bottom of a tampon box, the dangers of tampons are rarely visible to consumers.
“You’ll see an ad for Advil or Viagra and hear some monotonous voice warn you about even the smaller side effects like headaches or nausea. When you see a tampon commercial, it's all happy teenage girls running along the beach in bikinis. The dangers are beyond minimized,” she wrote for InStyle.
According to Vice News, over the past 50 years, tampon composition, especially tampons from major manufacturers like Playtex, Kotex or Tampax, has changed from natural ingredients (cotton) to synthetic ingredients (rayon, plastic).
“These synthetic fibers, along with a tampon's absorbency, can form an ideal environment for staph bacteria to flourish,” Vice reported.
As aforementioned, TSS can be triggered by a bacterial infection, typically involving staph bacteria.
Wasser, for the record, was wearing Kotex Natural Balance tampons.
According to Mayo Clinic, if you use tampons, you should read the labels and use the lowest absorbency tampon possible. It’s advised that tampons are changed at least every four to eight hours and their use should be alternated with sanitary napkins. When flow is light, Mayo Clinic suggests using minipads.
For anyone that has had TSS or a prior serious staph or strep infection, tampon use is not recommended.
TSS can happen even if you change your tampon frequently.
The longer women wear a tampon, the higher the risk for TSS. However, the condition can still occur if you change tampons frequently.
In Wasser’s case, she changed hers three times the day she began feeling sick. After attending a friend’s birthday party later that night, where she struggled to stay up and well, Wasser returned home and all she wanted to do was fall asleep.
She woke to a cop pounding on her door during a welfare check courtesy of her concerned mother, who had been worried about Wasser’s lack of communication.
“She [had] no idea how long she was in bed, and can't remember if it was day or night,” Vice reported in 2015.
Wasser was eventually rushed to a hospital with a 107-degree fever. She suffered a massive heart attack and was ten minutes from death.
“The doctors couldn't stabilize her, and nobody had any idea what was going on until they called an infectious disease specialist, who immediately asked, ‘Does she have a tampon in?’ She did, and they sent it to the lab. It came back positive for toxic shock syndrome,” Vice reported.
Her family launched a lawsuit against the company to make a point about the synthetic materials in the tampon industry and the lack of clarity about TSS risks on labels.
Most labels tell consumers to change your tampon every four to eight hours, including overnight. But Wasser and her family argued that "overnight" can mean longer than eight hours, especially when it comes to young girls, who may sleep nine or ten hours on the weekend. “[Tampon companies] should be telling you, 'Don't sleep in it. Use a pad,'" Wasser’s lawyer, Hunter Shkolnik, told Vice.
Victims, you’re not alone.
TSS is rare and most doctors are unlikely to ever see a case during their medical careers, which made Wasser feel that much more alone.
One of Wasser’s life-changing moments, she recalled in her InStyle op-ed, was when her girlfriend introduced her to the nonprofit You ARE Loved, website dedicated to raising awareness about TSS. The site is no longer active, but Wasser said connecting to other survivors helped her realize she wasn’t alone.
“It was the first thing in so long that had made me feel like I had something to live for—to make sure other women don’t have to go through what I did and to help those who have know they’re not alone,” she wrote.
While You ARE Loved is no longer up, it may be helpful for survivors to try and connect with others. There’s a TSS support group at MDJunction.com, where people share their own stories.
Have more questions about TSS? Visit MayoClinic.org or ask your doctor about prevention and risk.