A 30-year-old woman is now a quadruple amputee as she recovers from toxic shock syndrome that was not related to tampon use.
Anna Norquist of South Bend, Indiana, became ill with TSS caused by group A Streptococcus, her family said, the same bacteria that cause strep throat. She has her right arm amputated above the elbow, her left arm amputated below the elbow, and her left and right legs amputated below the knee.
“It’s been devastating. But I have to try to remain grateful that they were able to save her life. We can deal with life,” her brother Patrick Norquist told TODAY. “Doctors said we had an absolute miracle that she lived through what happened.”
After fighting for her life, Anna has come a long way and started the healing process: Her feeding tube has been removed and her appetite is improving; doctors are considering prosthetic limbs much faster than the family predicted, he wrote in an optimistic update on Facebook this month that featured a smiling photo of his sister. She has also been displaying a sense of humor: "She held her hand up and said, 'I'm giving you the finger and you don't even know,'" Patrick Norquist recalled.
Anna, a former gymnast, was “perfectly healthy” and living with her parents after recently moving back from Austin, Texas, her brother said. In early December, she attended a concert in Chicago on a Friday, then suddenly started feeling ill that Sunday.
“It got so bad that after about 24 hours, she couldn’t even lift her head up to take a sip of water. Her kidneys hurt, she couldn’t urinate,” Patrick Norquist said.
After being admitted to the hospital, Anna was in so much pain and her blood pressure was so low that doctors at one point put her in a medically induced coma. She was later moved to Indiana University Health Methodist Hospital in Indianapolis.
Anna has endured about a dozen surgeries so far, with each considered life threatening, and there are many more to come, her brother said.
She's been experiencing phantom pain, complaining that her amputated hands and feet really hurt. She has started physical therapy and has been asking if she'll be able to drive.
"Her attitude never ceases to amaze me. I have yet to witness her have pity for herself. Just gratitude and patience," her brother wrote. "She seems quite confident already that everything is going to be just good enough."
Anna will probably have to spend at least six months in the hospital, her brother said. The family has set up a fundraising page for medical expenses.
Doctors don’t know how the bacteria got inside her body — which is true in at least in at least half the cases of streptococcal TSS, the Centers for Disease Control and Prevention noted.
What is toxic shock syndrome?
TSS is a life-threatening complication of a bacterial infection, usually involving Staphylococcus aureus bacteria. Though it’s often associated with women who use tampons during their periods, less than half of cases today are linked to tampon use, according to the National Institutes of Health. Tampons were not involved in Anna’s case, her brother said. Other cases happen through skin infections, burns and after surgery.
Streptococcal toxic shock syndrome, a less common type, involves group A strep bacteria — the same organism that causes strep throat and “run of the mill skin infections,” said Dr. Shira Doron, an infectious disease physician at Tufts Medical Center. She is not treating Anna Norquist.
In both cases, the bacteria produce a toxin that wreaks havoc in the body.
“It is a complete system shutdown, basically,” Doron told TODAY. “All of the organs can suffer from failure… you can have gangrene and death of fingers, hands, toes, feet, which is why people end up with amputations.”
How do people get strep TSS?
You may first become exposed to the bacteria if you’re in contact with someone who is sick or a carrier of strep — about 5-15 percent of the population carries the bug without any symptoms, Doron said.
“Then you have to have some kind of risk factor: a minor trauma, a cut or a bruise or even a muscle strain that makes the skin or muscle susceptible for bacteria to get in there and then set up shop,” she noted.
Cases of strep throat and strep skin infection are common, but a tiny percentage of patients — a handful per 100,000 persons — experience an invasive infection, sometimes called “flesh-eating” strep disease, Doron said. An even smaller number of those patients, about one-third, go on to develop toxic shock syndrome.
TSS symptoms include:
- confusion
- diarrhea
- general ill feeling
- headaches
- high fever, sometimes accompanied by chills
- low blood pressure
- muscle aches
- nausea and vomiting
- characteristic red skin rash rash
How to reduce your risk of TSS:
To prevent the bacteria from entering your body through breaks in the skin, always clean any cuts and wounds, and keep them clean, Doron said.
Monitor your flu carefully: If you started to feel better, but then get worse again, that’s a bad sign because strep is one of the most common organisms to cause a bacterial infection on top of an influenza infection.
“Any time you have a viral respiratory infection that gets better and worse again, that’s an indication to see your doctor because that’s when you may be getting a group A strep infection on top of your viral infection and then it can turn into invasive group A strep,” Doron noted.
To lower the risk for menstrual toxic shock syndrome, the government advises avoiding highly absorbent tampons and changing tampons frequently, at least every four to eight hours.