Watching your child grow into an independent young adult isn’t always easy. This is especially true when your child is living with a chronic kidney disease (CKD) like complement 3 glomerulopathy (C3 glomerulopathy or C3G) or immune complex-mediated membranoproliferative glomerulonephritis (IC-MPGN).

How Parents Can Help With Disease Management

The type of support your young adult needs may depend on their living situation, maturity level, prognosis, and other factors.

The best place to start is often with a conversation. Ask what support would be helpful and look for ways to assist without taking over. Here are some ideas.

🗳️ Have you talked with your young adult about how C3G or IC-MPGN may affect their future?

Yes, and it was helpful.

Yes, but it was difficult.

No, but I plan to.

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Appointments

As young adults with C3G or IC-MPGN transition into adulthood, it’s important that they become the primary point of contact with their care team. As the primary contact they can learn to advocate for themselves in healthcare settings and start to feel more comfortable managing their own care.

If your young adult invites you to attend medical appointments with them, it’s OK to do so, but encourage them to ask questions and communicate directly with their providers.

When healthcare decisions arise, offer advice if asked, but let them make their own decisions. And never try to attend an appointment without their permission.

Insurance

Health insurance can be confusing, especially for a young adult learning to navigate it for the first time. Health insurance is an area where parental advice can be particularly valuable, as healthcare costs for a chronic disease can add up quickly.

Offer to help your young adult understand topics like:

• Prior authorizations
• Deductibles and copays
• Provider networks
• Out-of-pocket costs

Even if they remain on your insurance plan for now, encourage them to learn about their healthcare benefits and take the lead in managing insurance-related decisions.

Medications

Managing medications is an important part of living with a chronic disease like C3G or IC-MPGN. Look for ways to support and encourage treatment adherence without micromanaging their care. You can help by:

• Offering to set up reminders
• Brainstorming ways to organize their medication schedules
• Creating routines that make it easier to stay on track

Nutrition

Healthy eating can be challenging for young adults, especially if they’re balancing school, work, social activities, and other responsibilities.

If your young adult lives at home and you do most of the cooking, preparing kidney-friendly meals can help support their health.

If they live on their own or with roommates, you can share:

• Recipes
• Grocery shopping tips
• Healthy, ready-to-eat meals they can keep in the freezer

Disease Education

Until now, you’ve likely taken the lead in reviewing lab results and watching for signs of disease progression.

As your young adult begins to take more responsibility for their own care, encourage them to:

• Learn about their condition
• Understand the importance of regular nephrology appointments and lab tests
• Recognize symptoms that may signal worsening kidney function

As you discuss these, emphasize that your goal is to help them stay healthy while building the skills and confidence to manage their condition independently. Let them know you’re available to provide guidance and support as they take on increasing responsibility for their care.

How To Support Emotional Well-Being and Open Communication

Research shows that young adults with chronic diseases often report lower levels of emotional well-being and social connectedness than those without chronic health conditions.

These challenges can affect many aspects of disease management, including whether or not they attend appointments, take medications as prescribed, and recognize the importance of prioritizing their long-term health.

You can support your young adult by encouraging open communication, normalizing mental health care, and helping them build a broader support network.

Open Communication

Conversations about prognosis and disease progression can be difficult, but they’re important.

C3G and IC-MPGN are progressive diseases that can change over time. Young adults should think about the future and stay engaged in discussions about their health and treatment plan.

Here are a few tips to foster open communication:

• Be an active listener.
• Validate their emotions.
• Create a nonjudgmental, supportive environment.
• Model openness and vulnerability by sharing your own feelings when appropriate.
• Be honest with them, even when there are no clear answers.
• Respect their need for independence while letting them know you’re available to support them.

The goal of talking with your young adult about their health and future isn’t to cause alarm or focus on worst-case scenarios. It’s to create a safe space for ongoing conversations.

Mental Health

Anxiety, depression, and other mental health challenges are common in young adults living with chronic kidney disease. If you notice changes in your young adult’s mood or behavior, encourage them to seek therapy, counseling, or other mental health support.

Signs that your young adult may be struggling with anxiety or depression can include:

• Feelings of hopelessness
• Anger or frustration over minor issues
• Frequent crying or emotional outbursts
• Loss of interest in hobbies and activities
• Increased sensitivity to rejection or failure
• Sleeping significantly more or less than usual
• Changes in appetite or weight
• Social withdrawal or isolation
• Increased use of alcohol or other substances
• Less attention to personal hygiene or appearance

While these are some common signs of anxiety and depression in young adults, it’s not a complete list, and these signs don’t always indicate a mental health crisis. You know your young adult best. Any noticeable changes in their behavior or mood are worth paying attention to.

Professional mental health support doesn’t have to be reserved for a crisis or emergency. Consider talking to your young adult about counseling or therapy as a part of a proactive approach to overall well-being and self-care.

Peer Support

Young adults with chronic diseases can feel isolated or disconnected from their peers. They may also feel like others don’t understand what it’s like to live with a chronic disease, which can make it difficult to have a social life.

While family support remains important, encourage your young adult to build a broader support network. They could explore online communities or peer support groups for people with C3G, IC-MPGN, other kidney diseases, or chronic conditions in general.

Even if they don’t find friends with the exact same diagnosis, there is an overlap of experiences among young adults living with a wide range of rare, chronic illnesses.

Connecting with others who understand what it’s like to live with a chronic illness may help them feel less alone and more confident as they navigate adulthood.

How To Provide Support During Major Life Transitions

Early adulthood comes with certain milestones. Whether your young adult is considering college, entering the workforce, or moving out on their own, living with C3G or IC-MPGN can mean additional planning and preparation during major life transitions.

As a parent or caregiver, you can help by encouraging your young adult to consider how managing their condition may fit into their life changes. Rather than making decisions for them, help them identify potential challenges and develop a plan to address them.

For example, you might ask them questions such as:

• Do you need to find new healthcare providers?
• Have you identified where the nearest hospital or nephrology clinic is?
• Do you have a plan to manage prescription refills and medications?
• Will you need accommodations or flexibility from your school or employer?

Try to space out these questions as it may be overwhelming to discuss all of these changes at once. To help limit stress, you can ask how you can help with this transition.

Preparing early can help reduce stress and uncertainty, making major life transitions smoother for the entire family.

Take Care of Yourself Too

As you guide your young adult toward adulthood, it’s important to care for yourself too. Helping a loved one manage a chronic disease like C3G or IC-MPGN can lead to stress, uncertainty, and emotional fatigue, making self-care essential.

By prioritizing your own well-being and quality of life, you’ll be better able to continue providing support, love, and guidance as your young adult grows more independent.

With communication, planning, and care, your young adult’s transition from childhood to adulthood can be a positive step forward for the whole family.