Dealing With C3 Glomerulopathy (C3G) in Your Teens and Twenties

Your teens and twenties are already packed with change: You may be finishing school, starting college or a job, building relationships, and becoming more independent. C3 glomerulopathy (C3G), a rare chronic kidney disease, can make those transitions more complicated.

“Maintaining a strict medication regimen and frequent medical appointments on top of a packed academic schedule, hanging out with family and friends, and involvement in sports or extracurricular activities would be a challenge for even the most organized individual,” says Lily Breen, LICSW, a clinical social worker with the dialysis and kidney transplant program at Boston Children’s Hospital.

That doesn’t mean C3G has to take over your life and you’ll have to give up on the activities you enjoy or put your career goals aside. With the right support and strategies, you can make room for school, relationships, work, and plans for the future while still giving your health the attention it needs.

Navigating High School and College

“Hospital stays, frequent clinic visits, and even fatigue may interfere with school attendance, making it more difficult to succeed academically,” says Amy Bobrowski, MD, a pediatric nephrologist at Cleveland Clinic Children’s Hospital in Ohio. For young people with more advanced kidney disease from C3G, high blood pressure, swelling, anemia, and fatigue can also interfere with their usual activities, she says.

A proactive approach can make school easier to manage, starting with reaching out to your kidney social worker to initiate conversations with your school or college, says Breen. “A social worker can help advocate for academic accommodations and supports like a 504 plan.”

In college, Breen recommends contacting the school’s student support or accessibility and disability office. “Letting them know about your medical condition and needs can also be a good way to begin the process; they will help you reach out to your teachers or professors for additional support,” she says.

Breen suggests keeping the conversation focused on what C3G is making difficult and what would help.

• Explain the impact. You might say, “I have a chronic kidney condition that sometimes causes fatigue and requires frequent appointments. I’d like to talk about what I should do if I need to miss class.”
• Give notice when you can. If you know an appointment or treatment is coming up, tell your instructor rather than waiting until after you miss class or an assignment.
• Bring notes. Write down the main issues you want to discuss, such as attendance, deadlines, or making up work, so you don’t forget them during the conversation.

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Social Life, Dating, and Disclosure

C3G can make ordinary social situations more complicated, especially when you’re surrounded by people your age who don’t have to think about medications, food choices, fatigue, or whether to explain a health condition.

Handling Pressure Around Food and Alcohol

You don’t have to defend those choices to your friends, says Breen. A simple response can set the boundary without turning dinner or a party into a conversation about C3G. Consider saying something like:

• “That doesn’t really work with my diet, so I’m going to go with something different.”
• “I appreciate you looking out for me, but I’ve got my food and drinks figured out.”
• “I’m trying to be more intentional about what I eat and drink, so I’m going to skip that.”

How to Deal With Questions About How You Look

That doesn’t mean you owe anyone an explanation. If someone asks and you’d rather not get into it, Breen suggests a brief answer such as, “It’s related to a health condition I’m managing,” before changing the subject.

How to Decide Whom to Tell — and How Much

There’s no rule that says a friend, classmate, or date needs to know everything about C3G.

You get to decide how open you want to be about your health, says Breen. With someone you barely know, that may mean sharing only what’s necessary in the moment; as a friendship or dating relationship becomes closer, you may want to explain things like fatigue, medication demands, or why plans sometimes need to change to help the other person understand what life with C3G is actually like, she says.

If someone is simply pushing for details you don’t want to share, Breen says it’s okay to close the conversation.

Find People Who Get It

Feeling as though no one your age understands what you’re dealing with can add another layer of isolation. People who understand firsthand what you’re going through can offer something even supportive friends and family sometimes can’t: the experience of talking with someone who already understands, says Breen.

If You Want to Manage Your Medical Care Independently

The first step in managing your medical care on your own is to develop a basic understanding of C3G and how it’s affecting your kidneys, other organs, and your body as a whole, says Bobrowski. “This includes knowing [your] medications and having some understanding of what each one is meant to treat,” she adds.

Being able to describe your own symptoms, side effects, and medications during an appointment rather than relying on a parent or caregiver for every detail is a good sign that you’re becoming more independent, says Bobrowski.

• Build a comprehensive health file. Keep your medication list, insurance card, provider contact information, and electronic health record access together so you can find what you need quickly. Create and regularly update a brief medical summary that lists your diagnosis, major treatments, medications, allergies, important test results, and care-team contacts.
• Take charge of medications step by step. Learn medication names and doses, fill your own pillbox, set reminders, and learn how and when to request refills, says Breen.
• Practice running your appointments. Make the appointment yourself, come with questions, and try answering the doctor’s questions before looking to your parents for help. Breen recommends using this period to figure out which parts of managing care are still difficult so you can practice them.
• Plan ahead for adult nephrology. If you’re moving for school or work, research adult nephrologists in the area and ask your pediatric team for recommendations. Before the first visit, ask the new office which records it needs and make sure both practices have each other’s contact information.

“When it is time to transfer to adult care, we communicate with one of our adult nephrology colleagues to ensure that all necessary information is relayed and confirm that follow-up on the adult side occurs as planned,” says Bobrowski.

Continued, lifelong follow-up with a nephrologist is crucial, as well as regular health maintenance with a good primary care doctor, screening for diabetes, healthy weight, adequate physical activity, and all the things that can affect kidney and cardiovascular health even in the general population, she says.

“In short, this is a marathon, not a sprint. While early diagnosis and treatment is paramount, this is a condition that can recur, and so consistent follow-up and monitoring is going to be the most important factor as you transition from more supported pediatric care systems to independence and adult care systems,” says Bobrowski.

When You Launch Your Career

Health insurance deserves a place in career planning because your coverage may change when you start a new job or eventually come off a parent or guardian’s plan.

Pacing matters, too. Breen recommends being realistic about competing priorities, setting healthy boundaries before you reach burnout, and addressing problems early rather than waiting until you’re overwhelmed.

“Making room for rest, relaxation, hobbies, or creative activities can also help balance your health with work and the rest of your life,” she says.