{"id":19999,"date":"2018-12-19T13:25:29","date_gmt":"2018-12-19T20:25:29","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=19999"},"modified":"2022-07-14T12:33:44","modified_gmt":"2022-07-14T18:33:44","slug":"colorado-a-hotspot-for-rare-polio-like-illness","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/colorado-a-hotspot-for-rare-polio-like-illness\/","title":{"rendered":"Colorado a hotspot for rare, polio-like illness"},"content":{"rendered":"
<\/div>

The polio-like illness is so rare that only 165 people in the U.S. have had confirmed cases this year.<\/p>\n

It\u2019s called acute flaccid myelitis or AFM.<\/p>\n

\"A
Emily West survived a rare polio-like illlness and is thrilled to be home and recovering with her husband, Jarrod, and their two young sons. Photo by Cyrus McCrimmon for UCHealth.<\/figcaption><\/figure>\n

The chances of getting AFM are extremely rare: about one in a million. But strangely, Colorado has the second highest tally of cases in the U.S. this year, just behind Texas, according to the U.S. Centers for Disease Control and Prevention.<\/a> States like California and New York have far bigger populations than Colorado, but each has reported just a handful of AFM cases in 2018.<\/p>\n

Colorado, meanwhile, has 15 confirmed cases (plus one more suspected case) or nearly 10 percent of all reported cases in the U.S. this year. Health officials first detected a handful of AFM cases<\/a> in California in 2012. Then, in 2014, Colorado had an outbreak of the disease. AFM causes weakness in limbs, sometimes on one side of the body. Cases of AFM oddly have seemed to go dormant, then reemerge every other year during the late summer and fall, with additional outbreaks in 2016 and again this year<\/a>. The vast majority of cases have been among children, and some victims have had to cope with lasting paralysis.<\/p>\n

The disproportionate number of AFM patients in Colorado may stem from doctors here being better at diagnosing and reporting the illness. Or, it\u2019s possible that the viruses suspected of causing AFM may be more common in Colorado, health experts say. Researchers are racing to understand the causes and potential treatments for AFM.<\/p>\n

Meanwhile, a Colorado patient who survived a recent bout with the illness is recovering and counting her blessings.<\/p>\n

\u2018So happy to be home\u2019<\/strong><\/h3>\n

Emily West is a young mother from Lakewood. While she had the misfortune of getting the debilitating disease, Emily is not dwelling on the hardships she endured including terrible hallucinations that haunted her during a seven-week hospital stay.<\/p>\n

Instead, she\u2019s feeling euphoric and grateful.<\/p>\n

\u201cI\u2019m just really content right now,\u201d Emily said during a recent interview, as family members curled up around her at their home. \u201cI\u2019m so happy to be home again.\u201d<\/p>\n

Emily celebrated her 33rd<\/sup> birthday on Sunday with her husband, Jarrod West, and their two young sons, Ollie, 4, and Teddy, 2. Her mom, Betsy Brock, made Emily\u2019s favorite meal: matzo ball soup and latkes.<\/p>\n

\u201cShe\u2019s my hero,\u201d Brock said, hugging her daughter close, as tears welled in both of their eyes. \u201cI think she\u2019s been our strength.\u201d<\/p>\n

The family endured some very scary moments along the way. But now that they are through the worst of it, they are all feeling incredibly grateful.<\/p>\n

Emily can walk and talk again. She sometimes hesitates slightly when she\u2019s speaking. But, her speech and movement continue to improve each day. Her fingers, hands and wrists were sore and weakened before AFM from rheumatoid arthritis, an ailment Emily has suffered from since age 23. The weakness now stretches up into her arms and shoulders. It\u2019s hard for her to pick up the boys. And she doesn\u2019t yet have enough strength in her fingers to buckle the kids into their car seats. She also\u00a0can\u2019t drive yet because she\u2019s still working to speed up her reaction time from her brain to her foot.<\/p>\n

\"A
Emily West had to be in the hospital for seven weeks after a rare polio-like illness attacked her body. Shes thrilled to be recovering and back home with her two sons, Ollie, 4, and Teddy, 2. Photo by Cyrus McCrimmon for UCHealth.<\/figcaption><\/figure>\n

Still, with regular speech, occupational and physical therapy, she continues to improve and looks forward to getting back to work in 2019 as an ultrasound technician at a fertility clinic.<\/p>\n

\u201cEverything aligned perfectly to have the best outcome we could have had,\u201d said Jarrod.<\/p>\n

For Emily, simple everyday moments now feel like miracles.<\/p>\n

She was able to leave the hospital and come home on Oct. 5.<\/p>\n

At first, the Wests\u2019 younger son, Teddy, was shy, while Ollie was protective.<\/p>\n

\u201cTake it easy mommy,\u201d Ollie said as Emily climbed the steps to the front door. Then he handed her one of his favorite stuffed animals: a little brown bunny.<\/p>\n

\u201cYou can have this mommy,\u201d Ollie said.<\/p>\n

While she often gets tired, Emily rallied to celebrate Halloween just three weeks after her release from the hospital. She dressed up as a crow, Teddy was a dragon and Ollie was Spider Man.<\/p>\n

\"stockings
Emilly West is thrilled to be home for Christmas. Photo by UCHealth.<\/figcaption><\/figure>\n

\u201cThat was one of the first major things I was able to do,\u201d she said. \u201cI was able to walk well enough to trick-or-treat with the boys.\u2019\u2019<\/p>\n

The Wests celebrated Thanksgiving with both sides of the family.<\/p>\n

Now, they\u2019re gearing up for Christmas. The stockings are hanging over the fireplace. Emily and Jarrod took the boys to see Santa and they recently enjoyed an evening at the Zoo Lights, which involved quite a bit of walking. Emily managed to make it all the way around the zoo as lights twinkled overhead.<\/p>\n

\u201cI was so proud of myself,\u201d she said.<\/p>\n

Her goal now is quite simple: \u201cI really want to be normal again. That\u2019s driving me.\u201d<\/p>\n

A stroke of luck: \u2018I know what this is\u2019<\/strong><\/h3>\n

Emily\u2019s ordeal began in August with what seemed like a simple cold.<\/p>\n

Then, she started having aches that advanced up both legs and into her lower back.<\/p>\n

When the pain got really severe on Aug. 18, Jarrod took Emily to a hospital in Lakewood.<\/p>\n

She was declining fast. She could no longer control her muscles. Her legs crumpled beneath her. She couldn\u2019t eat on her own. A ventilator had to breathe for her.<\/p>\n

Doctors in Lakewood knew Emily had both encephalitis \u2014 swelling or infection in the brain \u2014 and myelitis \u2014 swelling or infection in the spinal cord.<\/p>\n

But, they didn\u2019t know precisely what was causing it, so they consulted with colleagues at UCHealth University of Colorado Hospital<\/a> in Aurora.<\/p>\n

There, the neurohospitalist on service at the time happened to be an expert on AFM and infectious poliomyelitis.<\/p>\n

\u201cIt was random that I was on service that week,\u201d said Dr. Daniel Pastula<\/a>, who is also a medical epidemiologist who has studied infectious disease for years and is an assistant professor for the University of Colorado School of Medicine<\/a>.<\/p>\n

\"Dr.
Dr. Dan Pastula recognized that Emily West had a rare illness and was part of a team that helped the young mother survive. Photo courtesy of Dan Pastula.<\/figcaption><\/figure>\n

Pastula needed ankle surgery and was supposed to have been out in August. But the surgery got postponed, which meant he was at the hospital exactly when Emily needed him.<\/p>\n

Pastula looked at the MRI scans of Emily\u2019s brain and spinal cord and immediately said, \u201cI know what this is.\u201d<\/p>\n

Emily had the telltale signs of AFM in her spinal cord. And, it was the right time of year to suspect the illness. Most cases of AFM occur in August, September and October. Doctors suspect that the seasonal tie is linked to various enteroviruses that are common during the late summer and early fall.<\/p>\n

Emily initially tested positive for enterovirus infection, but at first, doctors didn\u2019t know which type had sickened her. They later confirmed that she had a very specific strain called A-71. It\u2019s a cousin of the polio virus, and for Emily, it proved very dangerous.<\/p>\n

\u201cShe was critically ill,\u201d Pastula said.<\/p>\n

A medical crew in Lakewood loaded Emily onto a helicopter and flew her to University of Colorado Hospital.<\/p>\n

There, the race to save her life began.<\/p>\n

Helping the rest of the country figure out a cause of AFM<\/strong><\/h3>\n

One of the biggest challenges Emily faced is that her immune system was compromised. She had been taking a medication for her rheumatoid arthritis called rituximab, which suppresses part of the immune system that helps make antibodies.<\/p>\n

The lack of immunities hit Emily doubly hard. First, she was vulnerable to viruses, including ones suspected of causing AFM. Then, without sufficient antibodies, her body struggled to fight the virus.<\/p>\n

\u201cWe thought she wasn\u2019t making enough neutralizing antibodies against whatever enterovirus strain this was,\u201d Pastula said.<\/p>\n

\"Emily
Emily West is one of just 165 people in the U.S. this year to have gotten a rare polio-like illness called AFM. Photo by Cyrus McCrimmon for UCHealth.<\/figcaption><\/figure>\n

It\u2019s been hard to identify the cause for AFM because by the time the weakness develops in patients, the suspected virus is usually gone. In Emily\u2019s case, since her immune system wasn\u2019t able to clear the virus quickly, doctors were able to detect the exact strain of enterovirus \u2014 A-71 \u2014 in her spinal fluid. While no one ever would have wished for a young woman with suppressed immunities\u00a0to get sick,\u00a0Emily’s struggle has uncovered clues about the mysterious illness.<\/p>\n

\u201cShe has helped us figure out for the rest of the country one of the potential causes of AFM,\u201d Pastula said.<\/p>\n

Emily suspects she picked up the virus at the boys\u2019 daycare center. Health experts say that enteroviruses are quite common and were certainly circulating in the fall at childcare facilities. Hand washing is the No. 1 recommendation for avoiding viruses. But, it\u2019s difficult to avoid them when you\u2019re around children.<\/p>\n

\n

How to avoid viruses and acute flaccid myelits (AFM)<\/strong><\/h3>\n

Dr. Jeffrey Lewis<\/a>is a family medicine doctor at UCHealth Family Medicine Clinic in Boulder<\/a>.<\/p>\n

Lewis has been fielding more and more questions from parents eager to protect children from AFM. (The disease primarily has sickened children, but can strike adults.) The disease is quite rare and Lewis has not seen any children with it. But, the advice for preventing viruses and AFM is similar to avoiding other infectious diseases.<\/p>\n

Dr. Lewis\u2019 advice: <\/strong><\/h3>\n