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.
Mud and memories line the streets of a neighborhood in Rock Valley, a place that Cheri and Steve Gacke have called home for 30 years. They sit in chairs near the front door, exhausted and stunned.
“Yeah — so, it’s all gone — no insurance,” Steve said.
Sheila Brummer
/
Iowa Public Radio
In their yard, and in their neighbor’s, are piles of debris: mattresses, soaked sofas, clothing, appliances, photos and more.
This is a rural area of the state, so farmers joined the clean-up with their tractors, payloaders and other equipment to help with the heavy lifting.
They were a welcome sight to Rob Jansen. His mother lives across the street.
Sheila Brummer
/
Iowa Public Radio
“Getting rid of everything that came out of the main floor so far, then we got the whole basement,” Jansen said. “I don’t wish this on anyone, but it’s nice to see all the volunteers and all the hard work — lots is getting done.”
Escape from rising waters
Almost everything inside the Gacke home was destroyed after a surge from the Rock River shot over a protective berm and rushed through their lives in the middle of the night.
“I heard a beep — beep — beep — there was a big truck trying to back because he couldn’t get down the street because it was flooded, and that woke me up,” Cheri said.
“Within five minutes, it was coming in,” Steve said. “It was coming into the walls of the basement, and we decided we had better get out.”
“It was coming into the walls of the basement, and we decided we had better get out.”
Steve Gacke, Rock Valley resident
“We looked out and knew we had to walk through the water,” Cheri added. “And, so we walked a good block-and-a-half, and then we could get up on the grass. And then we walked over to the swimming pool, and people picked us up and brought us to Faith Church.”
They escaped with just the clothes on their backs and another dry set in their hands. Others needed to be rescued by boat and National Guard helicopter.
As they discussed the aftermath of the flood, the sound of generators, pumps and heavy equipment sometimes overpowered their conversation. The Gackes talked about being married for almost 40 years and how, after another flood, they decided to stay.
Sheila Brummer
/
Iowa Public Radio
“But they built these dikes and everything,” Steve said. “So, we felt that we were safe enough to redo our basement and added onto our garage — and it’s now worse than it was ten years ago.”
Steve’s voice broke, and he became emotional when he talked about what was in the garage.
“This is the first car I ever bought — a ‘74 Satellite,” he said.
He regretted leaving it behind when the water started to rise. They focused on moving a few items out of the basement instead. He looked at a photo of what the car used to be — white and pristine.
“Now, it’s just black,” he added.
Exploring the damage
Gov. Kim Reynolds privately toured the town of 4,000 by ATV and said 500 homes experienced some level of damage — from backed-up sewers to the unsalvageable.
“This is unprecedented, historic flooding. Where we’re breaking all records, sadly, with what we’ve experienced over the last couple of days,” Reynolds said.
She also visited Hawarden, Cherokee, Rock Rapids and Spencer — locations where rain-swollen rivers couldn’t handle 15 or more inches of water in just a few days.
The governor requested and received a Presidential Major Disaster Declaration for some of the most impacted areas. This allows the Federal Emergency Management Agency to assess the damage and aid homeowners, renters and businesses.
The Gackes could use that assistance.
“We worked full-time for years and years, and saved our money,” Cheri said. “And when we have money, we would fix up the house. We thought we could finally retire.”
Flood forced a detour
Now the Gackes are talking about starting over, at almost the age of 70, far from here. Rock Valley experienced another flood four years ago, in addition to one a decade earlier. And now, this new crisis. Three episodes in a decade.
“… we’re leaving town — we’re going to go to Oklahoma.”
Steve Gacke, Rock Valley resident
“We’re leaving, we’re leaving town,” Steve Gacke said. “We’re going to go to Oklahoma.”
They plan on staying with their daughter and her family there.
Another daughter, Jen Arendt, appreciated the volunteers as they packed up dishes, cups and platters inside cabinets in the kitchen. Because of closed roads, she had to wait two days to come help.
“I saw pictures online when I couldn’t get here, and it was devastating,” Arendt said. “But being here is heartbreaking. Everyone lost everything, everything they worked for is in a pile in the front yard, and it’s pretty hard.”
Jen also had a plan, and it involved her dad’s car. That car is the one he took her mom on dates in, and their honeymoon. It’s the one he drove Jen and her sister home from the hospital in after their births.
“Everyone’s rallying around, and we’re going to keep it for him,” she said. “We’re going to restore it.”
The Iowa Baseball Camp for the Deaf offers children in the deaf community the chance to socialize, meet other deaf or hard-of-hearing kids, and play ball.
For Dylan Heuer, the director and founder of Iowa Baseball Camp for the Deaf (IBCD), it’s important for deaf or hard-of-hearing kids to have the experience because, sometimes, being deaf or hard-of-hearing is isolating.
“A lot of times, they’ll just be like the only deaf person in their family, or even the only deaf person in their whole school building,” Heuer, who is deaf, said through an interpreter.
He modeled the camp after his own camp experience growing up, teaming up with the Iowa Cubs and a local Sertoma club, a foundation that offers funding for deaf or hard-of-hearing organizations.
“I love baseball and I love that experience I had as a camper and I just really wanted to share it with the community and feel like I could give back to deaf and hard-of-hearing students in that way,” Heuer said. “Deaf and hard-of-hearing students a lot of times are pretty isolated.”
Heuer established IBCD in 2015. Since then, it has grown from around 20 kids and volunteers to nearly 40 kids and volunteers this year. The weeklong camp takes place at the Johnston Little League facility.
“It almost becomes a one-to-one ratio, which is really cool and a lot more people looking forward to camp every year,” Heuer said. “It’s become really popular for the deaf community.”
Katy Faircloth, a volunteer from Ankeny, has been a volunteer at IBCD almost every year since 2015.
“Seeing all these deaf adults supporting deaf children is my favorite,” Faircloth said. “The coaches learn to communicate with the kids, treat them like their hearing peers, and use support from interpreters and deaf adults to make them feel part of a team. … They really are playing baseball.”
The kids in the camp are ages 7 to 14 and are separated into two age groups. One is for younger kids who are first-time IBCD campers, and the other is for older IBCD returners.
Emilee Cervetti, a 9-year-old from Johnston, said her favorite part of the camp is being around others who also use sign language.
“My favorite part is that the people sign, and that’s really cool because I can understand what they’re saying,” she said.
More: ‘Let me have a chance’: How running back Demarico Young overcame deafness, homelessness to thrive
She first learned about the camp from her mom and is interested in continuing her baseball journey because of the camp.
Last year’s camp brought together 10-year-old Bowen Tubaugh from Centerville and 9-year-old Maverick Lukowicz from Davenport and they are still best friends.
“It’s pretty awesome,” Tubaugh said.
The camp, which ends Friday, doesn’t just focus on drills and practice games. Campers will go to the Iowa Cubs vs. St. Paul Saints game Thursday and play a game of their own at Principal Park on Friday.
At Thursday’s game, which also is the Iowa Cub’s Deaf Culture Night, two of the campers will throw the first pitch for the game. They also will sign the national anthem during the seventh-inning stretch.
Iowa Cubs players, for the first time in team history, will wear special jerseys that spell out “Iowa” in sign language.
“I’m really proud that this is actually happening because I see the kids enjoying themselves, I see these big smiles on their faces,” Heuer said. “I’m proud to see all of these volunteers and staff come and want to be involved in these kids’ lives.”
Kyle Werner is a reporter for the Register. Reach him at kwerner@dmreg.com.
DES MOINES, Iowa (Gray Television Iowa Capitol Bureau) – An Iowa candidate for Congress is alleging the incumbent congressman will do things to hurt the Social Security system, but he’s not offering any of his own solutions.
Social Security reserves will run out in 11 years if Congress doesn’t act. That means recipients would only get 83% of their full benefits. 50% of seniors get half of their monthly income from Social Security. One in four seniors rely on Social Security for 90% of their monthly income.
Democratic congressional candidate Lanon Baccam, who is running against incumbent republican Zach Nunn in Iowa’s 3rd congressional district, held a press call Wednesday with the National Committee to Preserve Social Security and Medicare and the Iowa Alliance for Retired Americans. Baccam told reporters Nunn would raise the retirement age and cut benefits.
Baccam was asked repeatedly what his solution is.
“I’m not going to cut benefits here. Where Zach Nunn is, he is trying to shutter these offices. That’s going to limit the program delivery. He’s trying to raise the retirement age. That’s going to hurt folks who work for a living. These are clear distinctions here for what he’s trying to do with his position on Social Security versus mine. There’s no question I’m focusing in on and paying attention to Americans and Iowans who work for a living on this campaign and we need a champion for them in Congress and I will be that person,” Baccam said.
My colleague Dave Price and I both followed up and Baccam was unable to provide specific solutions.
“Hi, it’s Dave Price. So, are you keeping the status quo then? Are you not suggesting any changes?”
“There’s no question. We cannot cut this program. I will oppose any cuts to this program especially for our seniors who have paid into these programs for many years. They’re entitled to these benefits. They should be able to retire with dignity. I will not cut any of these programs that have been proposed by Zach Nunn and his groups,” Baccam said.
“This is Conner Hendricks. Do you actually have any proposed solutions though to this? You know, you say you’re not going to cut and you say that Nunn’s a threat but do you have specific solutions for this?”
“The first thing here is we need to protect it. Zach Nunn currently is prepared to cut Social Security, to raise the retirement age, to reduce the amount of offices or hours of operation like limiting the ability for Social Security to be able to deliver on their program. We at the very minimum have to make sure that we protect this program and Zach Nunn is threatening even that and so I think that’s critically important here for folks to understand and appreciate that Zach Nunn is not going to maintain even the status quo here. He is trying to cut this program. He will do it if given the chance.”
Congressman Nunn’s office tells us that no, he does not favor raising the retirement age. He also says he’s never voted to close or reduce hours Social Security offices.
“When the government created Social Security and Medicare, it made a promise to retirees. I am 100% committed to protecting that promise and strongly oppose any cuts to these programs. Any suggestion to the contrary is simply false. I am actively leading bipartisan solutions to protect these critical programs from out-of-touch politicians in D.C.,” Nunn said.
We also asked Nunn what solutions for Social Security he’d support. His office says he’d support reforms that root out waste, fraud, and abuse by bureaucrats.
—
Conner Hendricks covers state government and politics for Gray Television-owned stations in Iowa. Email him at conner.hendricks@gray.tv; and follow him on Facebook at Conner Hendricks TV or on X/Twitter @ConnerReports.
Copyright 2024 KCRG. All rights reserved.
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