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. It occurs when a part of the immune system called the complement system stops working correctly. 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 occurred when he learned he would need a kidney transplant. Fortunately, his father was able to donate a kidney, and Chase has since recovered from the procedure. The experience tested his resilience and taught him some important lessons. Here are three insights Chase has gained while living with C3G.

1. Build a Supportive Alliance With Your Healthcare Team

Chase’s journey underscores the importance of early diagnosis and proactive treatment. His bond with his healthcare team at 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.

2. Adapt Your Lifestyle To Support Your Kidney Health

Adjusting to life with C3G meant making significant lifestyle changes, 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,” Chase 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. “As I realized I would need a kidney transplant, that’s when my lifestyle changes got real,” Chase said. He started new medications and took steps to manage his anxiety about having surgery.

3. Help Others With Rare Kidney Diseases

After the 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!”

His advocacy efforts have included organizing a 5K run, volunteering with nonprofit events, and serving as a mentor for younger children with C3 glomerulopathy. 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 actively engage with your healthcare team. He also recommends embracing advocacy, not just for yourself but also for others and 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

MyKidneyDiseaseTeam is the social network for people with rare kidney diseases and their loved ones. On MyKidneyDiseaseTeam, people come together to gain a new understanding of kidney disease and share their stories with others who understand life with a rare kidney disease.

What has helped you on your journey with rare kidney disease? How do you reach out for support? Share your experience in the comments below, or start a conversation by posting on your Activities page.