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Real experiences from people and families living with HLRCC. Share a special tribute to someone you love or let others know about your journey.
Stories shared by patients and families on hlrcc.org and by partner organizations.
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“HLRCC is already a rare disease… only about 10, 15% of people who have the genetic defect move on to get kidney cancer. But once you get the kidney cancer, it’s supposed to be a pretty aggressive type of kidney cancer.”
hlrcc.org
Wrestler.Outdoorsman.HLRCC advocate.
Diagnosed with kidney cancer at 27, a cancer linked to the genetic condition HLRCC, Dylan founded The Outdoorsman Fellowship to raise awareness of kidney cancer, HLRCC and other rare cancers.
KOMU 8, Mar 1, 2025
“My 10-year-old daughter, Jadyn… underwent surgery on July 3rd, 2015. The tumor was highly cystic and contained solid matter. She was diagnosed with Renal Cell Carcinoma…”
hlrcc.org
“I was diagnosed with stage IV type 2 papillary renal cell carcinoma a few days after I turned 29 years old. It was a shock, to say the least, and like most cancer patients, I asked myself and my doctors, ‘Why? Why me?’”
kccure.org
“My then 23-year-old nephew was experiencing pains in the side of his abdomen… I still remember standing on the beach when the surgeons called and said it was kidney cancer, and that my nephew was scheduled for a radical nephrectomy surgery 2 days later. We took a photo of his body, which we knew would soon have a scar for life.”
hlrcc.org
“I was diagnosed at the age of 19 with a rare kidney cancer known as HLRCC, which currently has no known cure… My GTR has proven to be the closest thing I have to a cure for my cancer. Driving the GTR has become a tremendous outlet for me… I established Driven to Cure, a 501(c)(3) nonprofit organization, to help others and raise awareness for rare kidney cancers.”
driventocure.org
“While sparing in the gym as a professional boxer, I felt a pain in my left lower abdomen. Assuming it was from boxing, I went to bed, but at 3 AM, the pain intensified, and I could barely breathe. My partner rushed me to the ER, where they suspected a kidney stone… The CT scan revealed an 8.8 cm mass in the upper-middle left kidney consistent with kidney cancer.”
hlrcc.org
“My kidney cancer diagnosis came at the very young age of 27… thinking back it felt unreal that I was in this situation, life and time seemed to stand still…”
hlrcc.org
“This is definitely a knowledge is power situation,” said Ball. He tells HLRCC patients, “It can be taxing logistically to screen every year. It’s also anxiety-provoking. But the tradeoff is, if something does come up and we catch it early, it could be a curable event.”
NIH Record, Aug 6, 2021
Stories published by other organizations. Each link opens the full story on the publisher’s site.
The Patient Story
At 36, while trying to start a family, Lynn had a fibroid-related pelvic MRI that unexpectedly showed bone metastases, which led to a stage 4 FH-deficient (HLRCC) kidney cancer diagnosis. She shares how she found the NIH, joined a clinical trial, and keeps teaching while in treatment.
Kidney Cancer Association
Michele was diagnosed with HLRCC in 2018 after a radical nephrectomy, despite fibroid surgeries starting at age 20. She argues that early-onset fibroids should prompt HLRCC screening and that Black women in particular should push for answers.
Rare Disease Day
After years of fibroid surgeries and unexplained skin lumps, Clare researched her symptoms, found HLRCC herself, and confirmed it through her GP and a geneticist. She now has yearly kidney scans and lives relatively worry-free.
Stories reflect each person’s own experience and are not medical advice. Talk with your care team about your situation.
