Rat lungworm victim describes her agony with disease

Shawzy Cann describes the agony of burrowing worms on the left side of her brain as the “worst pain” she’s ever felt.

The 43-year-old former Hawaii island resident is one of the 82 people with confirmed cases of rat lungworm disease from 2007 to 2017. A review of the cases was published last week in the American Journal of Tropical Medicine and Hygiene. Of the 82 cases, there were two deaths and 65 hospitalizations.

Hawaii island had the most cases at 68, followed by Maui at 10 and two cases each on Kauai and Oahu, the review found. In 2018, state health officials said, 10 people contracted the disease, and so far this year there have been six, though there are likely many more unconfirmed or unreported cases, according to the state Department of Health.

Cann, who now lives in Colorado, said she became violently ill on Halloween weekend in 2014 after eating organic mixed greens purchased from the Hilo farmers market. A spinal tap at Hilo Medical Center confirmed rat lungworm, and she was hospitalized for 11 days. Her then-husband also contracted the disease. She said she knows of at least three or four other people who got sick that year, including a neighbor in Puna who died.

“I literally went to the hospital saying, ‘Something is eating my brain. Please help me,’” said Cann, who became paralyzed on the right side of her body, lost her ability to walk and still goes to physical therapy twice a week. She is also on medication to control seizures resulting from the illness. “We’re in such pain. That’s why we have chronic pain the rest of our lives, because our nerves have been destroyed. I have nerve damage on three-quarters of my body.”

Most people become ill by accidentally ingesting a snail or slug infected with the roundworm parasite found on produce such as leafy greens. The disease, known as angiostrongyliasis, can be debilitating, often affecting the brain and spinal cord. The most common symptoms include severe headaches and neck stiffness. In the worst cases, the disease results in neurological problems, severe pain, long-term disability and death.

State officials have been grappling with how to control rats, snails, slugs and the relatively new semi-slug — 75% of which are estimated to carry the disease. The worms can cause significant damage as they travel through the body and attack nerve endings. The only way to confirm rat lungworm is through a spinal tap. There are no current blood tests to detect it.

“The problem with spinal taps is they don’t always come up positive. Say the worms are in your heart or in your lungs, they’re not in your spine at the moment. The worm parasites in the antibodies, they need to be floating in your spinal column at the moment when they stick that tiny little needle in,” said Cann.

The Health Department said it is not keeping track of those who were infected and doesn’t know the prevalence of the infection or parasite, “as mild and even some moderate infections are likely not recognized or reported.” The DOH said its focus is to identify when infections occur and try to prevent them.

Most infected individuals have relatively mild to moderate symptoms and generally recover within a few weeks, the department said, though in less common cases symptoms can be more severe and long- lasting.

“The risk of rat lungworm disease exists statewide, and the public should continue to take preventive measures to protect themselves,” said David Johnston, a state epidemiologist who worked on the study, adding that consumers should thoroughly wash produce and cook food to prevent the spread of rat lungworm.

Cann contends the state needs to do more to track the true number of cases.

“The state’s not doing anything right now. Nobody’s counting right. There’s nobody responsible for counting undocumented cases,” she said. “I would double or triple that number because a lot of people have gone to the hospital for help and have been refused. Those people aren’t counted.”

The Legislature in 2017 appropriated $1 million to help the Health Department’s overall response and outreach in 2018 and 2019. In 2018, the department said, it spent about $250,000 on public education, including working with retailers, distributors and farmers to build awareness of the disease.

Grocery stores and restaurants are working with the DOH to report any shipments of produce that may have been infested with slugs or snails. The department said it is tracking down the source of any affected produce and working with growers on inspections and controlling snail, slug and rat populations.

“I have permanent damage,” said Cann, who has chronic pain from her head all the way down the right side of her body. She’s also been on antibiotics four times in the last nine months to treat kidney infections. “It is lifelong symptoms. I have heavy anxiety that leads to panic attacks that can lead to seizures if I don’t manage my pain for the rest of my life. This is the worst thing that anybody could ever do to me. It’s like being electrocuted, like somebody’s holding a stun gun to the back of your neck. This is torture.”