Rosie L.

After almost 8 years and 8 different specialist appointments, Rosie Love was finally confirmed by kidney biopsy with aggressive crescentic IgA nephropathy (IgAN). Her first sign was microscopic hematuria while she was in undergrad. The primary care doctors and nurse practitioners would tell her it was “my time of the month” despite her adamant denial that it was not. Then when she was 22 and about to lose her health insurance, her primary care doc said let’s just test your cholesterol for fun. She was then told, your cholesterol is high, kid. You need to lay off the pizza and beer. She then ran a marathon a year later, lost 35 lbs, and it went up 100 pts. She then was having bladder and urethral pain and the urologist couldn’t determine the cause and she also had GI issues. A colonoscopy was performed, along with an endoscopy, 2 cystoscopies (1 with bladder distention), and a CT scan of her abdomen. The only finding was tiny kidney stones.

During graduate school for the first time, lacking good health insurance, she didn’t see another doctor again until she had good health insurance when a primary care doctor did a regular blood panel for screening her cholesterol, which was still in the upper 400’s. An additional finding this time was that the protein in her blood was low. She could not explain that, but she recommended that Ms. Love see a lipid specialist finally and get her cholesterol under control. She tried the Lipitor, but it didn’t budge. She tried the high-dose Crestor, but it barely budged. Finally, it was the cardiologist who asked if anyone had ever screened for proteinuria, and of course, they hadn’t. She was screened and her proteinuria was almost 5 grams. Ms. Love was sent back to her primary care to confirm and then referred to a nephrologist to work up to find the cause of the proteinuria and kidney damage…

After diagnosis, Ms. Love was put on a high-dose prednisone protocol and lisinopril. The high-dose prednisone was successful in stopping the progression of her aggressive IgAN, not without considerable side effects, but she remains in remission to this day, only taking lisinopril and maintaining a mostly gluten-free diet. Ms. Love’s personal journey has a profound inspiration for her professional passions.

After getting an MPH, she started working primarily as a qualitative researcher for ICON Clinical Outcomes. Later, she went back to get her PhD in Pharmaceutical Health Services Research. Her focus is on patient engagement, patient-centered outcomes, stated preferences, and health literacy. When she wrote her personal statement to go back to school, she had already gone through her diagnosis and treatment for IgAN. In the personal statement, she wrote about the voice of the patient. This is a quote from that: “I had really become an advocate for the voice of the patient before I really knew what that meant and before I really understood patient-focused drug development (PFDD) methods because of my lived experience with IgAN.”