We are nearing the end of July, but we're still going strong celebrating IgA Nephropathy Awareness Month. Today, we want you to meet 15-year-old Lillie Enicke and her mother, Carrie. Lillie was diagnosed with IgA Nephropathy when she was 8 and then developed Nephrotic Syndrome at age 13. Her story is told by her mom: "In September 2017, when Lillie developed Nephrotic Syndrome, she was put on prednisone. Prednisone is a wonderful drug for healing, not so much for side effects. My sweet Lillie gained over 40lbs in 4 months. The prednisone wasn’t helping, but the doctors continued to have her take it. Over time, her joints started to deteriorate. Lillie is now in physical therapy because of her painful joints and her hips are now out of alignment. She also developed fluid behind her heart which resulted in another of many hospitals stays for EKGs, ultrasounds and more tests.
Because prednisone wasn’t working, the doctors added Cellcept. Still, the results weren’t what was desired so Lillie had to do Rituximab infusions. These infusions caused Lillie’s immune system to be severely compromised. In September 2018, Lillie was exposed to chickenpox. Because of her compromised immune system, Lillie had to have four antiviral shots to boost her chickenpox immunity.
In addition to all of the physical effects listed above, there are many mental/emotional effects as well. Lillie now has high anxiety and panic attacks. All of the medications she takes, the weight she’s been unable to lose, the painful joints have all caused her self-esteem to drop. In saying all of this, Lillie is a fighter. She is an advocate. Lillie travels the country telling her story in hopes of getting clinical trials open to children. She tells her story so the government makes changes to existing laws and creates new laws for kidney patients and living donors. Lillie has been to Capitol Hill to talk to legislators about the Living Donor Protection Act and funding for innovative kidney research like the Kidney X project.
Lillie is still Lillie and a typical teenager. She loves hanging out with her friends, she loves boating and tubing, hiking in the mountains, all things Disney and most of all… dance! Lillie has been dancing since she was 3 and loves all genres. Lillie got to dance at Disney World in June 2019 in the parade down Main Street at the Magic Kingdom."
- Lillie Enicke