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A Curvy Road to Diagnosis

LeeAnn Hujanen went through a dramatic turn of events that led to her PKD diagnosis on April 11, 2013. Adopted as a child, LeeAnn was unsure of her biological medical history, and didn't know PKD ran in her biological family. In 1999, while she was pregnant with her oldest daughter, the ultrasound tech noticed spots on her kidney. Her obstetrician said not to worry about it, and that they would keep an eye on it. So LeeAnn put the kidney spots out of her mind.

Then about three years ago, LeeAnn was in a bad car accident. Stopped at a stoplight, an SUV going 65 miles per hour ran into the back of LeeAnn's car. Amazingly, she was able to kick the door of her car open and squeeze out of it. The first responder on the scene surveyed the damage and told her she was lucky to walk away from the accident. She suffered from whiplash bruising and minor cuts and scrapes, but she had her life.

Not long after the accident, LeeAnn started noticing back pain. Attributing it to the crash, she went to the doctor's office, where they recommended an MRI to test for nerve damage. The tests results showed something very unexpected: polycystic kidney disease (PKD). "I was attributing the back pain to the crash, not even thinking about the spots they found on my kidneys so long ago," LeeAnn said.

After the initial shock of the diagnosis, LeeAnn asked the doctor what she should do. After learning there was no cure, she was told to quit smoking, reduce the sodium in her diet and take painkillers. Unsatisfied, LeeAnn set up an additional appointment at the University of Minnesota Medical Institute. "I wanted a doctor who would take an active role in helping me get better," she said. In addition to searching for a supportive doctor, she also started reading everything she could about PKD. That is how she came across the PKD Foundation and pkdcure.org, where she was able to read more about the disease and its effects.

The hardest part of PKD is the pain, LeeAnn says. The pain—which she describes as similar to passing kidney stones—can drop her to her knees. Although that pain makes it hard to get out of bed sometimes, LeeAnn powers through it. A nursing assistant with two jobs and a mother of three, LeeAnn has a full plate. During the work day, she helps care for patients with various medical needs. Outside of work she enjoys spending time with her kids and gardening. She does not let the pain keep her from doing the things she loves.

Sharing her story and raising awareness about the disease is key for LeeAnn. "If my story can help somebody else get diagnosed, or help them learn to live with the disease, I want to share it," she said. LeeAnn's hope for the future is that there will be medication for PKD, so patients will not be so reliant on painkillers. "The more we discover about this disease, the better off society will be as a whole."

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