Explaining Your C3G Diagnosis

Complement 3 glomerulopathy (C3G) is an extremely rare autoimmune and kidney disease with mostly invisible symptoms. Most people have never heard of the condition. Even fewer can probably pronounce it.

Given all of that, your loved ones may not fully grasp the impact C3G can have on your daily life. It’s enough to leave anyone feeling isolated.

Explaining C3G and how it affects your body may help others understand, validate and support you. Nephrologist Corey Cavanaugh, DO, offers a how-to guide for that conversation.

How to describe C3G

If you want to help someone understand C3G, your best bet is to keep it simple.

“C3G is an ultra-rare disease, and it’s not easy for most people to relate to. And terms like ‘complement system’ and ‘glomerular disease’ can be confusing,” Dr. Cavanaugh acknowledges.

But you can explain C3G without using them. Here’s how: Dr. Cavanaugh suggests comparing your immune system to a sink.

If your immune system is healthy, your body can “turn on the tap” when needed to fight an infection. The water coming out of that faucet is inflammation.

You may not think of inflammation as a good thing, but it’s a crucial part of your immune response that works to detect, combat and remove infections.

A healthy immune system turns off the tap when the infection’s gone. The inflammation stops, and you get back to your life.

“In C3G, the faucet is left on,” Dr. Cavanaugh explains. “The immune system just runs and runs and runs, which keeps the inflammation going. Over time, that chronic inflammation damages your kidneys.”

Explain the impact

C3G can be challenging because even though you feel its effects every day, you may look fine.

“It isn’t something like a rash that you can see and touch,” Dr. Cavanaugh notes. “It’s just there, all the time.”

But you can help others understand C3G by sharing specific examples of how having the autoimmune kidney condition affects your daily life. You could say, for example, that:

• Fatigue impacts your performance at work or school
• Your calendar is dominated by infusion appointments
• Gout flares make it painful to walk the dog
• You avoid concerts and crowded spaces because your medication raises your risk of infection

Examples like these can make an abstract idea like C3G more concrete to people who’ve never heard of it. You may also want to share the toll that living with a chronic illness takes.

“Beyond just the physical fatigue, there’s a sense of social isolation that comes with conditions like C3G,” Dr. Cavanaugh relates. “You want to focus on your career or your family or friends, but now, a huge portion of your brain is occupied by this rare disease.”

Consider telling your loved ones about the:

• Time and energy you spend getting medical care
• Ways treatment may disrupt your schedule
• Side effects of the treatment you’re on
• Stress of worrying about your kidney health
• Effort involved in getting disability support

These and other examples give color and texture to your experience — and help the people around you understand your needs.

Addressing uncertainty

C3G research is advancing quickly. Game-changing treatments have recently become available.

“This is a really exciting time because we actually have therapies that really work,” Dr. Cavanaugh says.

But there are still plenty of unknowns to contend with, as there’s a lot we still don’t understand about C3G. And we can’t cure it yet either.

What’s more, no two people experience C3G the same way. Dr. Cavanaugh says that how (and how far) it progresses can vary based on factors like:

• How active the disease is
• Whether your treatments are working
• How long it took to get a diagnosis
• Your overall health

You may not be able to answer every question your loved ones and colleagues ask about what your C3G diagnosis means for the future. Sometimes, it helps to shift the focus away from what you don’t know and can’t control. Instead, focus on concrete ways that your loved ones can help.

Requesting support

Everybody’s experience with C3G looks different, but this much is certain: There will be times when you need to lean on your loved ones, your care team and your community. You can also:

• Request access to support services in your area.
• Ask for adjustments to perform your best at work or school.

It can be hard to ask for support — especially when you have a rare disease. To start, make a list of the different ways C3G makes it hard for you to function day to day. No problem is too small.

For each entry on your list, ask yourself:

• Is there a practical solution?
• What kind of support would you need to implement it?
• Am I comfortable asking for the things I need?

Choose an easy win and work your way up to bigger asks.

You decide how much to share

Sharing your experiences with C3G may help you feel less isolated — but it’s not something you have to do. Your diagnosis is yours alone.

If you need to ask for adjustments at work or school and don’t want to get into the details, it’s enough to say, “I have a rare autoimmune disease that affects my kidneys.”

From there, your conversations can focus on the kinds of support you need.

Your feelings are valid

Sometimes, conversations about your health don’t go as planned. If your efforts to explain life with C3G leave you feeling doubted or dismissed, Dr. Cavanaugh wants you to know that you aren’t alone.

“Kidney diseases are silent sometimes. Invisible. But your symptoms — what you’re feeling — is absolutely accurate,” he affirms.

Keep trusting yourself and keep speaking up. The right support is out there. It’s just a matter of finding it.