Margaret’s Story: Living with C3G

A diagnosis can change everything—your routine, your plans, and the way you think about the future. The choices that come next aren’t always clear, and for many, navigating a new condition means balancing treatments with the life they want to live.

Vermont resident Margaret was diagnosed with Complement 3 glomerulopathy (C3G) just a few years ago. C3G is a rare kidney disease that damages the glomeruli—the blood vessels in the kidney that filter blood and produce urine. Like many facing a new diagnosis, Margaret had a lot of questions. 

It all started with discovering blood in her urine during an ER visit. Local doctors referred her to a nephrologist at Columbia University in NYC. Following her initial appointment, she was quickly diagnosed with C3G. Along with this, she was told she most certainly also had monoclonal gammopathy of renal significance (MGRS), a disorder that can further impact kidney function, due to her age. Margaret was referred to a hematologist and began a clinical trial to treat her MGRS. Clinicians believed that treating MGRS would help alleviate the effects of C3G, but despite this approach, damage to her kidneys continued.

Navigating Treatment 

Margaret and her husband, Jack, had to strongly advocate for her care team to treat her C3G as a separate condition, rather than simply hoping that addressing the MGRS would improve her overall health. After her involvement in the MGRS trial, it became clear that her C3G needed dedicated attention and a personalized treatment approach. 

Throughout the challenging journey of diagnosis and treatment, Margaret learned that not all treatments are the same. What works for one person with C3G might not work for another, and there were certain treatments she was unwilling to consider. Upon her diagnosis, Margaret experienced more frustration than grief. Through her own research, she came to understand that depending on how her condition progressed, she might eventually need dialysis—a prospect she was determined to avoid at this stage of her life. While dialysis can be lifesaving, it also carries significant challenges. For Margaret, the thought of dialysis brought up feelings of anger. Like many patients, she had to navigate the difficult balance between medical options and the quality of life she wanted to maintain.

The Reality of Living with C3G

She admitted that there were aspects of living with C3G she was not aware of going into the journey—one being the impact on the body as a whole. Although C3G and MGRS directly impact kidney function, the condition also damages other organs. In fact, she found herself resisting the idea that her body was being damaged by this disease at all. However, reading abstracts and reaching out to the Ph.D.s writing papers on C3G helped her better understand her condition and ensured she was receiving top-tier specialized care.

What Keeps Her Going

At the end of the day, Margaret spoke about two main things that have kept her afloat.

First, a positive attitude. It was clear from the moment we started chatting with Margaret that she was a bright and positive person, with an unmatched sense of humor. While she occasionally wonders if her optimism is a way to shield herself from the challenges she faces, she wouldn't change her outlook, as it has helped her navigate each day with a bit more peace of mind.

The second is her husband, Jack, who helps advocate for her during her appointments. Navigating the medical world can be challenging, and Margaret acknowledges that it’s often difficult to advocate for oneself. Margaret attributes a great deal of her medical success to her husband. She recounted one time when, after a great deal of his own research, Jack insisted she undergo a CK test, which measures the level of creatine kinase in the blood. Had Jack not been there, Margaret might have left the appointment without the test, and her condition could have taken a much worse turn.

After taking the test, Margaret received a call from her physician just a few hours later, advising her based on the results of the CK test to stop taking atorvastatin, a medication she’d been trying, immediately and to go to the hospital. Margaret is extremely grateful for Jack’s dedication, but she also feels compassion for those who don’t have a support system to advocate for them during their health journey.

Jack, as a dedicated advocate for his wife, emphasized the importance of tenaciously pursuing personalized medicine and practicing aggressive. He highlighted the critical role of a well-rounded support network—one that includes not only medical professionals but also family, friends, and knowledgeable allies, regardless of their medical expertise. Recognizing that no single person can internalize the vast universe of medical knowledge, he stressed the value of collaboration and the indispensable emotional support provided by those who stand by a patient’s side.

Looking Ahead

What’s next for Margaret? One word: remission. Margaret remains focused on moving forward, making medical decisions that align with her goal of living life to the fullest. With the unwavering support of her family, the knowledge she’s gained, and the commitment of her healthcare team, Margaret is confident that they can guide her toward a future free of C3G and MGRS. Her positive outlook is something we could all take inspiration from