Chase Gallagher’s journey with C3 glomerulopathy (C3G) began unexpectedly in childhood. “When I was first diagnosed in second grade, I honestly had no concept or grasp of the disease at that time. I just knew that I had something wrong with me,” Chase explained.

Chase recounted the initial confusion and fear that accompanied his diagnosis, a sentiment echoed by many who face chronic conditions at a young age.

C3 glomerulopathy is a rare kidney disease characterized by the complement system — a part of the immune system — attacking the kidney tissues. This condition can lead to significant kidney damage and, ultimately, the need for a transplant.

One of the most pivotal moments in Chase’s life came when he learned he would need a kidney transplant. Although he was able to receive a kidney from his father and has recovered from the procedure, the event tested his resilience and catalyzed his path as an entrepreneur, investor, and advocate for those facing similar battles.

Building a Supportive Alliance

Chase’s journey underscores the importance of early diagnosis and proactive treatment. His bond with his health care team at the Children’s Hospital of Philadelphia was pivotal.

“One way we created a bond with my original C3G doctor was through getting to know them, their family, and always asking questions,” Chase shared.

This collaborative approach with his doctors has been crucial in navigating the complexities of his treatment and care.

Lifestyle Adaptations

Adjusting to life with C3G meant significant lifestyle changes for Chase, from adopting stringent dietary restrictions to managing the side effects of numerous medications. “When I was first diagnosed, I had to take medication morning and night,” he recalled. “I had to limit the amount of salt I had, which means I had to completely remove some foods from my diet.”

Preparing for a kidney transplant required even more adjustments. He had new medications and also worked to manage his anxiety about having surgery. “As I realized I would need a kidney transplant, that’s when my lifestyle changes got real,” Chase said.

The Power of Advocacy

Post-transplant, Chase felt a strong urge to help others avoid the pain he endured, propelling him into patient advocacy. “I don’t want any other kid or adult to experience that ever!” he stated.

His advocacy efforts include organizing a 5K run, volunteering with nonprofit events, and serving as a mentor for younger children with C3G. These initiatives not only provide support but also raise crucial awareness and funds for rare kidney diseases like C3G.

For those navigating similar paths, Chase offers sage advice: Educate yourself about your condition, build a strong support network, and engage actively with your health care team. He also recommends embracing advocacy, not just for yourself but for others, and he urges people to remember that resilience is forged in the face of challenges.

“I had — and still have — a very strong urge to find a cure,” Chase said.

Talk With Others Who Understand

At MyKidneyDiseaseCenter, the site for people with kidney disease and their loved ones, people come together to gain a new understanding of kidney disease and share their stories with others who understand life with kidney disease.

What has helped you on your journey with kidney disease? How do you reach out for support? Post your experience in the comments.