Iowa
Here’s what I’ve learned from seven years with rare disease – Iowa Capital Dispatch
In hindsight, I had warning signs. Six months in and out of hospitals around the Midwest could have clued me in. But I’ve never been the kind of person who expects the worst.
“You’ll only hear from me if the test comes back positive,” the Mayo Clinic resident had said. After a week in the hospital, my gastrointestinal tract remained paralyzed, and I hadn’t yet slept. At this point, I wasn’t sure which was worse: a diagnosis of a complex, rare disease, or continuing my search for answers.
“Don’t expect to hear from us,” he assured me again. “Porphyria is so rare.”
A week later, when I received a diagnosis of acute intermittent porphyria (AIP), I was stunned.
• • •
Leap day is also Rare Disease Day, the rarest day of the year. However, rare diseases are not rare. One in 10 people in the U.S. has one.
What follows are some of the most important lessons I’ve learned living with AIP. While my experience is personal, it’s not unique to the experience of living with a rare disorder, invisible illness or chronic disease.
Doctors are ‘practicing’ medicine
My introduction to living rare was seven years ago, when I learned I had AIP after 19 years of misdiagnoses and illness. I hadn’t yet realized that even a health care provider considered an expert in porphyria, wasn’t specialized in my body or specific disease presentation.
My diagnosis came with a list of expectations: I shouldn’t have another attack, I shouldn’t need more than a single dose of Panhematin, and I should be able to avoid variables that activate disease, in order to live a “normal” life.
My Mayo Clinic doctors based their assurances on case studies and their understanding of metabolic disorders. I was the only person they’d ever seen who’d tested positive for the disease. With more than 7,000 rare diseases, no one provider can be expected to know them all. Doctors provide guidance based on available information and their best guess.
Medical trauma is the norm
I believed doctors when they told me my pain was due to toxic stress, and that my organs were paralyzed because of the intravenous pain medication. During my long road to diagnosis, health care providers stopped taking me seriously. It also became increasingly complicated for my friends to be supportive and for my family to understand.
I looked like I was making it all up, and I became less convinced anything was biologically wrong. I started doubting my own symptoms. Most of us weren’t raised to question doctors. I certainly wasn’t confident enough to advocate for myself.
Undiagnosed medical post-traumatic stress disorder runs rampant in our community, and often providers won’t make mental health referrals unless we explicitly ask for help. Even though I’ve yet to meet someone with a rare or chronic disease who hasn’t experienced medical trauma, I know plenty who minimize their experiences.
No one will tell you to grieve
There’s a collective grief in the rare disease community over lost time, missed vacations, and life milestones that were somehow limited or neglected because of our bodies’ needs. Worse still, we watch more able-bodied peers experience them all. There’s no fast and easy way to grieve. The mental processing may seem crushing, but it’s necessary.
I finally realized that when hard feelings rolled in, it hurt more to hold them in than it did to let myself feel. I can’t describe how difficult that was at first. But all of my feelings were valid. Eventually I learned to meditate and found a great therapist. Things didn’t change, but they were easier to accept.
Personal provider relationships are key
When there aren’t enough patients to know what medications are truly safe or what alternative treatments could be beneficial for symptoms, it’s crucial to try different things. Some will work better than others, and this experimentation can be scary.
Finding doctors with the time to get curious is difficult. The U.S. health care delivery system isn’t set up for this sort of doctor/patient collaboration. Yet, I have the direct emails and cellphone numbers of several providers.
When living with a rare disease, it’s crucial to have a point-person doctor who manages our local care and will stand up for us in sticky situations, like being questioned about our diagnosis when we’re in crisis at the emergency room. Mine is my hematologist, and we have a trusting relationship that’s taken years to build.
I average five doctor appointments a week, primarily with providers I’ve found through referrals from fellow rare disease friends. I need to be able to ask my providers questions, and have candid conversations about what’s been helpful for other AIP patients around the world. We can learn more from others in our rare disease community than any published research.
• • •
This Rare Disease Day is more than an opportunity to raise awareness. It’s a chance to come together as a community to see how much we share in the rare disease experience. It feels lonely when you’re 1 in a million, but through connection and advocacy, we can learn from each other.
Hear from Iowa folk duo Weary Ramblers on their song Pretty Lights of Denver
Hear from Kathryn Severing Fox and Chad Elliott of Weary Ramblers as they discuss their musical chemistry and creative process.
What would RAGBRAI be without Hairball and the Pork Tornadoes?
Cyclists on the July 19-25 ride will have the chance to rock with both of the venerable Iowa party bands as they perform on back-to-back nights.
They’re perennials on the Register’s Annual Great Bicycle Ride Across Iowa, as traditional as the Mississippi River tire dip. Hairball will bring its signature pyrotechnic, costumed arena rock tribute to the main stage in the overnight town of Boone on Tuesday, July 21, and the Pork Tornadoes will be in Marshalltown on July 22 to perform selections from their seemingly endless, genre-spanning repertoire.
Other headlining party-cover faves booked in RAGBRAI overnight towns will include the Spazmatics in Dyersville, Not Quite Brothers in Independence and Gut Feeling in Onawa.
But if you’re a fan of original music, make plans to spend a little extra time at the stage in Guthrie Center, the Monday, Day 2, overnight town.
While Gimikk, a RAGBRAI classic cover band that also proudly performs some originals, will be the headliner, don’t miss the other Iowa originals on the bill.
Most prominent are the Nadas, a fixture on the state’s music scene for nearly 35 years. Co-founders Jason Walsmith and Mike Butterworth got their start in Ames in the early 1990s while students at Iowa State University. Expanding into a five-member ensemble, they worked to build a following across the country and have sold thousands of records on their independent Authentic label featuring their original, alt-rock-leaning folk-Americana tunes.
Marking 25 years of the Nadas in 2018, Walsmith told the Register, “As long as it’s fun, we’re always going to do it.” And they still are, performing regularly and adding another album, “Come Along for the Ride,” to their lengthy discography in 2023.
Also on the bill: a duo that has launched with a bang. The Weary Ramblers, Iowans Chad Elliott and Kathryn Severing Fox, are songwriting and performing partners who got their start in 2022. Elliott, a veteran guitarist and singer on the Iowa scene, and Severing Fox, a classically trained musician steeped in jazz violin, released a debut album in 2024 that hit the top 10 on the Americana charts and produced a hit single, “Pretty Lights of Denver.”
In December 2025, they collected a major award for independent songwriters presented at the Grand Ole Opry in Nashville, Tennessee. With a second album starting to chart, they were back in Tennessee again in January to compete in the International Blues Challenge, and came home the overall winners for solo or duo act.
In growing demand as touring performers, they opened for the Des Moines Symphony at the annual Yankee Doodle Pops show July 3 on the grounds of the Iowa Capitol, drawing an enthusiastic response from a crowd of nearly 100,000.
Superintendent summons former students to put on a show
Steve Smith, the Guthrie Center RAGBRAI entertainment chair who tapped the Nadas and Weary Ramblers, is high on a third act: Hillbilly Air Show, the afternoon’s opener. They’re a country duo that includes former Navy fighter pilot Brick Imerman and whose songbook is rich with the tunes of honky-tonk balladeers like George Strait and Alan Jackson.
One thing Imerman, of Panora, and Elliott, a Lamoni native who lives in Jefferson, have in common: They spent their school days in Guthrie Center, where Smith was a teacher and now is superintendent of the regional school district.
“There’s just a personal connection,” said Smith, who counts himself a big fan of the musical careers his former students have forged. And he said he’s been kicking himself for 25 years after failing to book the Nadas for a school reunion when he had the chance,. He said he wasn’t going to pass up the opportunity a second time.
Smith said he got some pushback from other Guthrie Center RAGBRAI organizers for his unorthodox choices, but stuck by them.
He said he hopes the town’s show and an effort to keep food and beverage vendor prices reasonable will reward the riders for climbing some of the 2026 ride’s steepest hills coming into and leaving town.
So far, he said, he’s gotten a positive reception from veteran RAGBRAI riders who’ve heard about his eclectic music lineup.
“They said they don’t always go to the (overnight town) shows, but, ‘If you’re having them, we’re there,’” he said.
Hillbilly Air Show goes on at 2 p.m., followed by the Weary Ramblers at 4 p.m. and the Nadas at 6:30 p.m. Smith invites Des Moines metro residents who aren’t on the ride to join the party.
“We’re a town of 1,600 that’s going to be invaded by another 30,000 to 40,000, but we’re ready,” he said.
RAGBRAI 2026 music headliners
Onawa, Day 0, Saturday, July 18
8:30 p.m.: Gut Feeling
Harlan, Day 1, Sunday, July 19
8 p.m.: Decoy
Guthrie Center, Day 2, Monday, July 20
9 p.m.: Gimikk
Boone, Day 3, Tuesday, July 21
8:30 p.m.: Hairball
Marshalltown, Day 4, Wednesday, July 22
8:45 p.m.: Pork Tornadoes
Independence, Day 5, Thursday, July 23
8:45 p.m.: Not Quite Brothers
Dyersville, Day 6, Friday, July 24
9 p.m.: Spazmatics
SIOUX COUNTY, Iowa (KTIV) – A Woodbury County woman was taken by ambulance to the hospital after a rollover took place in Sioux County.
The Sioux County Sheriff’s Office says 45-year-old Jenni Madison of Sioux City was taken to the hospital Saturday, July 11.
Authorities say at about 12:01 p.m., deputies investigated a rollover that took place on Highway 60, one mile south of Alton. According to the Sioux County Sheriff’s Office, the car was traveling north on Highway 60 when the driver lost control, entered the median and rolled.
Deputies say Madison was taken by ambulance to the Orange City Area Health System to be treated for minor injuries. The vehicle sustained $12,500 in damage.
Orange City Fire Department, Alton Fire Department, Alton Ambulance, the Orange City Police Department, and the Iowa State Patrol helped the Sioux County Sheriff’s Office at the scene.
Want to get the latest news and weather from Siouxland’s News Source? Follow these links to download our KTIV News app and our First Alert Weather app.
Copyright 2026 KTIV. All rights reserved.
A number of Iowa high school baseball standouts were selected during the 2026 Major League Baseball draft. The amateur draft was conducted July 11-12, 2026 from the Pennsylvania Convention Center in Philadelphia, Pennsylvania.
Gable Mitchell, Kaleb LaFavor, Caleb Klein, Sam George, Nate Smithburg and Kooper Schulte each heard their names called during the draft.
Gable Mitchell Was Two-Way Star For Iowa City High
Mitchell, an Iowa City High grad, was picked in the eighth round with the 193rd overall pick by the Toronto Blue Jays. He played his collegiate baseball at the University of Iowa after batting .466 with 12 extra-base hits, 55 runs scored, 29 RBI and 25 steals, going 5-0 with a 0.95 earned run average and 18 strikeouts as a senior.
In high school, Mitchell was an all-stater in baseball and earned all-conference honors on the football field. His grandfather is Dan Gable, an Olympic wrestling gold medalist who led the Hawkeyes to 15 NCAA championships.
Kaleb LaFavor Lone Current Iowa High School Baseball Player Selected
LaFavor, currently a senior at Sioux City Bishop Heelan High School, was selected by the Boston Red Sox in the 10th round with the 304th pick. He has gone 3-1 with 40 strikeouts and a 0.79 earned run average in just under 18 innings on the mound this summer.
Klein, a Western Dubuque High School prep, played at Southeastern Community College and Southeast Missouri. He helped lead the Bobcats to back-to-back Class 3A Iowa High School Athletic Association State Baseball Tournament championships.
During his senior season at Western Dubuque, Klein hit .414 with nine doubles, seven triples, 49 runs scored and 30 RBI, stealing 20 bases. He went to the Atlanta Braves with the 442nd pick in the 15th round.
Several Former Iowa High School Baseball Players Hear Their Names Called
George, a former Pleasant Valley High School standout, played for Minnesota State University this past spring and was picked by the Milwaukee Brewers in the 19th round with the No. 581 overall selection.
In his final high school season with the Spartans, he struck out 62 batters in 44 innings, putting together a 2.07 earned run average.
Smithburg was picked by the Tampa Bay Rays in the 18th round with the 533rd pick after playing at Fairfield High School and for the Oklahoma Sooners.
As a senior, Smithburg went 6-1 with 83 strikeouts and a 0.43 earned run average in 47 innings pitched on the mound.
Schulte, who played at New London High School, played collegiately at Central Arizona, Southeastern Community College and for the Iowa Hawkeyes. He was selected by the New York Mets in the 20th round with the 600th pick overall.
He was an all-stater for New London in 2022, helping lead them to a state baseball championship that same season. As a senior, Schulte hit .444 with six home runs, 13 doubles, 50 runs scored, 44 RBI and nine steals, recording three saves and 29 strikeouts in just over 14 innings pitched.
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