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.
Five people were shot and injured at an Iowa City pedestrian mall near the University of Iowa campus overnight, police said Sunday. Students from the university were among the injured, according to school officials.
The Iowa City Police Department responded to a report of a large fight in the 100 Block of East College Street at 1:46 a.m. early Sunday, the department said in a news release. Arriving officers heard gunfire.
Multiple victims were hospitalized, police said. Police confirmed to CBS News that one person was in critical condition, while the other four victims are stable.
University of Iowa President Barb Wilson said in a statement that three students were among those shot. None of the victims has been publicly identified.
No arrests have been made, and the investigation is ongoing. Police said they are seeking information about five “persons of interest associated with this shooting.” The university also shared the request for information.
The pedestrian mall was closed for several hours and reopened Sunday afternoon.
Here are the candidates for High School on SI’s Iowa high school athlete of the week for April 13-18. Read through the nominees and cast your vote.
Voting closes at 11:59 p.m. PT on Sunday, April 26. The winner will be announced in the following week’s poll. Here are this week’s nominees:
Taylor Roose, Pella boys track and field
Roose competed in three events at the Norwalk Invitational, winning all three in the 100-meter dash, 200-meter dash and long jump.
Daxon Kiesau, Urbandale boys track and field
Kiesau swept the throwing events at the Norwalk Invitational, taking first place in the shot put and the discus.
Alex Burger, Southeast Valley boys track and field
Competing at home, Burger dominated, earning four gold medals. He won the 400-meter hurdles and the long jump while running on the winning 4×200-meter relay and shuttle hurdle relay.
Kolby Hodnefield, Clear Lake boys track and field
Hodenfield, a defending state champion, broke the meet, venue and school record in the 200 and the 400 at the Clear Lake Invitational. He added victories as part of the 4×100 and 4×400 relays. Both relays also set meet records.
Easton Moon, North Polk boys tennis
Moon has started off his senior season on the courts unbeaten, winning all four matches while dropping just one game in 44 played.
Ava Lohrbach, Gilbert girls golf
One of the top golfers in the state, Lohrbach has had a hot start, firing a 35 in her nine-hole debut and a 72 for her 18-hole opener.
Nathan Manske, Algona boys golf
An elite quarterback and basketball player, Manske is showing his golfing skills this spring, coming out with a state-low 30 in a nine-hole event.
Ella Hein, Tipton girls track and field
Hein set school records in the 400-meter run and long jump at the Tiger/Tigerette Relays while also locking in the Blue Standard and qualifying for the Drake Relays. She won the long jump (18-6) and was second in the 400.
Maeve Bowen-Burt, Iowa City High girls track and field
The sophomore helped the Little Hawks land three Drake Relays events on the last night of qualifying, advancing in the 400 hurdles, along with the sprint medley and 4×400 relays.
About Our Athlete of the Week Voting
High School on SI voting polls are meant to be a fun, lighthearted way for fans to show support for their favorite athletes and teams. Our goal is to celebrate all of the players featured, regardless of the vote totals. Sometimes one athlete will receive a very large number of votes — even thousands — and that’s okay! The polls are open to everyone and are simply a way to build excitement and community around high school sports. Unless we specifically announce otherwise, there are no prizes or official awards for winning. The real purpose is to highlight the great performances of every athlete included in the poll.
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The late boxing great George Foreman lies buried in a cemetery in the northwestern corner of Iowa – a place he has no connection to outside of a lone visit to the region nearly 40 years ago.
Foreman died March 21, 2025, at the age of 76 in Houston and was buried in Logan Park Cemetery at Sioux City, Iowa, a month later, city officials confirmed. Foreman’s family returned Thursday to his burial site, holding a news conference with Sioux City Mayor Bob Scott to reveal Foreman’s burial place, marked by a large monument that bears an image of him as a teen following his Olympic gold medal boxing win.
The family explained in a statement released by Sioux City officials that he had visited the Iowa city in 1988, and often recalled the sense of peace he experienced there.
After traveling to the city on April 17 last year to bury Foreman, his family said they immediately understood the region’s appeal.
“Our father lived a life of purpose, faith and gratitude,” the family said in a statement released by Sioux City officials. “To see him laid to rest in a place that brought him peace means everything to us.”
Scott joined the family at Foreman’s monument that lies just a few miles north of the Missouri River in an upper Midwest city of nearly 87,000 people. The cemetery overlooks the scenic Loess Hills, created by windblown silt deposits that reach up to 200 feet high (about 61 meters) and line the river along the Iowa border for 200 miles (322 kilometers).
“Their story is a reminder of how one place can stay with someone for a lifetime,” Scott said.
A native Texan, Foreman rose to fame when he made the 1968 U.S. Olympic boxing team, winning gold in Mexico City. He became the heavyweight champion of the world in 1973 by defeating the great Joe Frazier, only to lose the title a year later to Muhammad Ali in the famous “Rumble in the Jungle.”
A full 20 years later in 1994, Foreman became the oldest man to win the heavyweight championship at 45, defeating Michael Moorer in an epic upset.
Foreman retired in 1997 with a 76-5 career record.
He then moved on to the next chapter in his life as a businessman, pitchman and occasional actor, becoming known to a new generation as the face of the George Foreman Grill. The simple cooking machine sold more than 100 million units and brought him more wealth than boxing.
A biographical movie based on Foreman’s life was released in 2023.
Copyright © 2026 by The Associated Press. All Rights Reserved.
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