JENNA SMITH Despite daily dialysis, UI undergraduate pursues academics, activities, and activism for others with kidney disease.
Jenna Smith could treat her disease as a burden.
She could avoid strenuous activities and travel. She could take an easier class load or shy from extracurricular activities—given the three hours a day she spends undergoing kidney dialysis.
But the University of Iowa sophomore doesn’t do any of that.
Instead, Smith is earning double degrees in civil engineering and art. She plays on the University’s ultimate Frisbee team, co-chairs the UI American Society of Civil Engineers concrete canoe competition, and volunteers with Habitat for Humanity. Last summer, she hiked part of the Appalachian Trail and volunteered with a church group on a South Dakota Indian reservation.
“I do a lot, and trying to do everything along with dialysis, it’s definitely challenging,” Smith says. “But I just figure out what I want to do, if I can do it, and how I’m going to go about doing it.”
Smith recently beat out 2,000 others in an online “Kidney Idol” contest sponsored by a national dialysis company. Her reward is a seven-day cruise to Alaska, which she and a longtime friend plan to take this summer.
In nominating her daughter for the contest, Lynne Lanning wrote of walking into her daughter’s room one night 14 years ago to find a note taped to the wall. “Dear Angels,” it read. “I left my window open so you could come in and heal me, if that’s OK.” Lanning wrote that now, at age 22, “Jenna remains an inspiration to all who know her.”
Smith, an Iowa City native, has been on dialysis since age 7, when a rare autoimmune disease destroyed her kidneys. The life-threatening condition, known as dense deposit disease, causes deposits to build in the kidneys, destroying their ability to filter and clean the blood.
Little was known about dense deposit disease, also known as MPGNII, when she was first diagnosed. But 15 years later, scientists are closer to understanding the condition—and Smith can take some of the credit. Through two businesses she started in high school, she has helped raise more than $35,000 for research that could someday lead to treatments for the disease.
Using a torch and rods of glass, Smith makes her own glass beads, designing bracelets and necklaces that she sells at two local jewelry stores. She also sells a line of greeting cards designed by her and twin sister Jessica, a fellow UI art and engineering student.
The money raised supports Kidneeds, a foundation started by Smith’s parents that’s dedicated to dense deposit disease research. Through events like an annual chili dog fair and enchilada festival, the foundation has raised more than $1 million since 1997. It has also sponsored conferences on dense deposit disease that have brought some of the world’s leading specialists closer to finding a cure.
There is no known treatment for dense deposit disease, which affects about one in one million people. A transplant Smith received in 2000—a kidney donated by her father, Richard Smith, professor of otolaryngology and nephrology in the UI Carver College of Medicine—failed after just a year and a half.
The only option for now is dialysis, a process done six days a week to clean and filter her blood. Many dialysis patients must visit a hospital or clinic three times a week to undergo the procedure, but Smith is certified to dialyze at home, meaning much more freedom for the busy college student.
“The hardest part is just knowing that I have to go home at some point during the day so I can dialyze,” she says.
Lanning says she has always been impressed by the way her daughter manages to prioritize the things in her life that are most important. Sometimes that means getting up at 3 a.m. to dialyze before an athletic tournament, for example, or bringing the 50-pound dialysis machine on road trips with friends.
Because there have been times in her life when dialysis affected her energy level and memory, Smith loves learning, and savors the ability to run across an ultimate Frisbee field or stay up late with friends, Lanning says.
“Jenna's strength is that the losses didn't embitter her,” Lanning says. “She chose instead to be grateful for the things she does have.”
In the future, Smith hopes to combine interests in the environment, art, and engineering into a career in green architecture.
“I know I don’t want a desk job,” she says. “Whatever I do in the future, I want to be outside. I want to be active.”
Story by Madelaine Jerousek-Smith; photo by Tom Jorgensen.
April 28, 2008