Every Friday, rain, snow or shine, Kendra Gottsleben makes her way to the outpatient care center at the Sanford USD Medical Center in Sioux Falls, South Dakota.
“I see my Sanford Health nursing people every week. I get to know them and their families, ” Gottsleben, 38, said. “When I was younger I was in the Sanford Castle.”
Born with the rare disease mucopolysaccharidosis type 6 (MPS VI), she needs regular treatment to remain healthy.
“With having MPS, I receive weekly infusions, which is an enzyme replacement therapy. I’ve been receiving them at Sanford Health for close to 20 years,” said Gottsleben, who was part of the enzyme’s clinical trial. “Without this weekly infusion, my cells build up with this gluey-like substance. This weekly infusion of Naglazyme, that’s about a five-hour process, goes in and tries to slow down the process. It’s not a cure.”
‘Fairview has been in my life since I was 4’
Several of Gottsleben’s organs have been challenged over the years, leading to multiple operations at Fairview Health Services in Minneapolis, Minnesota.
“Fairview has been in my life since I was diagnosed with MPS when I was four,” Gottsleben said. “Fairview is where I’ve had almost all my surgeries. I had a decompression. I’ve had a VP shunt. I’ve had open-heart surgery.”
The operation on her heart took place as recently as 2020. Tricky to intubate, she says, Gottsleben has built up a high level of trust with the caregivers in Minneapolis. The same goes for the nurses she interacts with weekly at Sanford Health.
“With Sanford Health and Fairview, I’ve had so many incredible people come into my life,” said Gottsleben, originally from Vermillion, South Dakota.
“I’m very lucky. I’ve always felt very lucky with such good health care teams and institutions so close to where I am.”
‘I owe them everything’
With Sanford Health and Fairview Health Services intent on strengthening care together, Gottsleben is excited about the possibilities.
“For me it’s like my two worlds are colliding. It’s just fun for me to see,” Gottsleben said. “My hope is that with the two incredible institutions combining both the scientific research and the medical teams, that it will be a powerhouse.”
While it will mean more seamless care for her, Gottsleben is shining a spotlight on work being done for all people with rare diseases. She’s incredibly grateful for the compassion Sanford and Fairview have shown to her family.
“Once you have that (trust), you’re good,” Gottsleben said. “I owe them everything. I would say to everybody, nurses, doctors, the people in the OR, all teams, everybody, that I owe my life to you, and I hope that you know just how amazing you are.”
- Sanford and Fairview Health announce intent to combine
- Rare, but not alone: CoRDS connects rare disease patients
- Close-to-home physical therapy helps Minnesota family