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Iowa State ready to stay hot on trip to Cincinnati

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Iowa State ready to stay hot on trip to Cincinnati



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Here’s what I’ve learned from seven years with rare disease – Iowa Capital Dispatch

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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. 

Claire Richmond of Des Moines is an advocate for individuals with rare diseases. (Photo courtesy of Claire Richmond)

“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. 

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• • •

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

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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

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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.

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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.

• • •

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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.



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Caitlin Clark’s record-setting night fuels No. 6 Iowa in 108-60 win at Minnesota

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Caitlin Clark’s record-setting night fuels No. 6 Iowa in 108-60 win at Minnesota


MINNEAPOLIS (AP) — Caitlin Clark became the all-time leading women’s scorer in major college basketball by scoring 33 points to pass Lynette Woodard and post her 17th career triple-double for sixth-ranked Iowa in a 108-60 victory over Minnesota on Wednesday night.

“We just played free and had a lot of fun tonight across the board,” said Clark, who also broke the NCAA single-season record by sinking eight 3-pointers for a total of 156 in 2023-24.

Clark now has 3,650 career points. Woodard had 3,649 points for Kansas from 1977-81, before the NCAA sanctioned the sport. Earlier this month, Clark broke Kelsey Plum’s NCAA scoring record (3,527 points).

“Tonight is the night of the real record,” coach Lisa Bluder said.

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Gabbie Marshall scored 16 points to pass the career 1,000-point mark for the Hawkeyes (25-4, 14-3), who were eliminated from contention for the Big Ten regular season title earlier in the evening when second-ranked Ohio State beat Michigan. Iowa went 22 for 39 as a team from 3-point range, the most ever allowed by Minnesota and the most makes in Hawkeyes program history.

Clark had a big hand in that, both shooting and distributing. She had 12 assists and 10 rebounds.

“I love passing the ball and setting my teammates up for success, and I think that more than anything is going to let us have a lot of success in March,” Clark said. “It can’t just be me all the time.”

Amaya Battle had 18 points for the Gophers (15-13, 5-12) on a tough night of trying to guard the reigning AP Player of the Year, who went 8 for 14 from 3-point range to delight the Hawkeyes-heavy crowd announced at Williams Arena’s official capacity of 14,625. This was the 11th sellout in 11 true road games this season for Clark and her crew and tied for the biggest at home in Gophers program history.

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Clark left little doubt she’d reach Woodard’s record by dribbling left off a screen and swishing a 3-pointer from the top of the key just 13 seconds into the game. She swished her first four 3-pointers, three of them from extra deep, and had 15 points in the first 3:18 of the game.

The heat check came midway through the first quarter, a flick from the top that bounced off the back rim and prompted a half-hearted “Overrated!” chant from a few wise guys in the Minnesota student section.

Clark had five assists in the third quarter and passed up several opportunities to shoot in the second half in favor of finding her teammates. She only needed three points to pass Woodard starting the fourth quarter, but as the clock ticked down the reserves were off the bench and ready to enter the game.

“I was going to let her get the record,” Bluder said.

With 4:16 left, Clark let a 3-pointer fly from the wing — for a swish and the record. She was subbed out 30 seconds later.

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The previous biggest crowd for a Gophers game this season was on Nov. 19 against Connecticut with star Paige Bueckers, a native of Minnesota, that drew 10,869 fans. That’s the only other home attendance figure for the Gophers in 2023-24 greater than 6,000.

UP NEXT

Iowa: Hosts No. 2 Ohio State on Sunday. The Hawkeyes are tied with Indiana for second place and would win the tiebreaker over the Hoosiers for the No. 2 seed in the Big Ten tournament next week if they beat the Buckeyes. Indiana wraps up the regular season against Maryland on Sunday.

Minnesota: Plays at Penn State on Sunday.

___

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Get poll alerts and updates on AP Top 25 basketball throughout the season. Sign up here. AP women’s college basketball: https://apnews.com/hub/ap-top-25-womens-college-basketball-poll and https://apnews.com/hub/womens-college-basketball



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Iowa Senate votes to require businesses use E-Verify to avoid hiring undocumented workers

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Iowa Senate votes to require businesses use E-Verify to avoid hiring undocumented workers


Iowa businesses would be required to use the federal E-Verify system to determine whether their employees are legally in the country under a bill that passed the Iowa Senate Wednesday.

The Senate voted 30-17 Wednesday afternoon to pass Senate File 108, sending it to the Iowa House for consideration. All but one of the Republicans present voted in favor of the bill. Sen. Dan Zumbach, R-Ryan, voted with every Democrat to oppose it.

The Senate has passed a version of the bill in past years, but it has never been taken up by the Iowa House.

This year, the Senate’s vote comes as immigration is shaping up to be a major issue in the 2024 presidential race and in Congress.

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The U.S. Senate earlier this month failed to pass a bill that would have created a new mechanism to shut down the border if illegal crossings reached a certain threshold. And Congressional Republicans have indicated new border measures are a top priority for them.

Iowa lawmakers are considering several bills this year that proponents say would help deter illegal immigration but critics have described as anti-immigrant.

More: Migrant workers ask Iowa lawmakers to reject slate of immigration bills

Sen. Julian Garrett, R-Indianola, said the border is “probably the number one issue” he hears about.

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“There’s not a lot we can do here in Iowa at the state level, but this is something we can do,” he said. “And I think it will make a difference.”

Sen. Janice Weiner, D-Iowa City, said if Iowa lawmakers are concerned about the border they should contact their federal representatives and senators.

“Ask them to pass the bipartisan law on immigration reform and the border that was agreed to in Washington,” she said. “That’s the solution. It’s a federal issue.”

What would the Iowa E-Verify bill do?

It is already illegal under federal law to knowingly hire someone who is in the country illegally.

The Iowa bill would allow a county attorney, local law enforcement official or member of the public to file a complaint with Iowa Workforce Development if they suspect a company has violated the law.

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If a company is found to have violated the law by hiring an undocumented immigrant, the company would be required to terminate the employee and would be placed on a three-year probationary period during which it would be required to file quarterly reports with the state listing every new employee hired during that period.

A second offense would cause the company’s business license to be permanently revoked.

More: Iowa doesn’t require US citizenship for in-state tuition. A Republican bill would end that.

The Iowa Secretary of State’s office would be required to maintain a database of companies found to violate the law.

Employers could defend themselves in court by arguing that they did not knowingly employ an undocumented immigrant in violation of the law.

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Garrett said passing the bill would help level the playing field for businesses that already diligently check to ensure their employees are in the country legally.

“It’s very unfair to law-abiding legitimate businesses and employees to have to compete with people that are coming across the border, and you know they’re pouring across right now,” he said. “The Biden administration doesn’t seem inclined to do a thing about it.”

Business groups oppose the Iowa bill

Many of Iowa’s largest business groups are opposed to the law, including the Iowa Association of Business and Industry, Iowa Chamber Alliance, National Federation of Independent Businesses, Quad Cities Chamber of Commerce, Cedar Rapids Metro Economic Alliance, Master Builders of Iowa, Iowa Grocery Industry Association, Heavy Highway Contractors Association, and Agribusiness Association of Iowa.

Sen. Tony Bisignano, D-Des Moines, read off a list of business groups who oppose the bill during debate.

“Everybody opposes this,” he said. “And it’s not because they want to circumvent the law and use undocumented workers. It’s because in their professional operation, it doesn’t work.”

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Bisignano said the program would also harm potential employees who are wrongly flagged.

“What about the employee?” he said. “What about the applicant who they got his middle initial wrong or a letter in his name or a number on the Social Security and it’s red flagged? And how long are they unable to be employed?”

Garrett said thousands of Iowa businesses already use the E-Verify program voluntarily. Several other states require businesses to use the program.

“Right now more than 5,000 businesses in Iowa use E-Verify,” he said. “They don’t have to. It’s not required. Why would they do that if this is such a horrible program?”

Stephen Gruber-Miller covers the Iowa Statehouse and politics for the Register. He can be reached by email at sgrubermil@registermedia.com or by phone at 515-284-8169. Follow him on Twitter at @sgrubermiller.

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