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When you live with C3G, your challenges can be varied and wide-reaching
We’ve carefully developed some resources to help you throughout your journey.
Monitoring and Management
Lost in the words
Keeping track of things like lab numbers and talking with your doctor about them is important. However, understanding medical terms can be hard. To demystify some of the jargon, we created a glossary of frequently used terms.
Feeling unheard
Do you feel like your doctor isn’t seeing the full picture of your day-to-day life with C3G? Our Productive Appointments Guide may be able to help.
Struggling With Symptoms
A common symptom of damaged kidneys is swelling. It can be especially bothersome and may impact your day-to-day life.
In our Tips section, there’s a quick massage technique that may help.
Everyday Life
Talking to your doctor
Living with progressive kidney disease can be scary. At times, the future need for dialysis or transplant can seem unavoidable. Talk to your doctor about your fears and anxieties. Use our Productive Appointments Guide to get started.
Tools for everyday life
Having a rare kidney disease can make it frustrating to navigate your day-to-day activities. Our guide can help. Check out our tips for managing diet, exercise, and more.
Career impact
It can be tough to manage your career and rare kidney disease all at once. Use our guide for supporting your health needs in the workplace.
Emotional and Mental Well-Being
Living Well With C3G
The challenge of living with C3G is real. Here are some helpful resources, tips, and ways to improve your mental well-being.
Patient portrayal.
Feeling alone
Do you feel like no one understands what you are going through? Are you looking for additional support?
Explore patient-led Facebook groups for the understanding, community, and support you may need.
Staying calm
Living with C3G can be challenging. Try listening to these Spotify playlists to unwind.
While you prepare for your next appointment, we’ve got some tips that might help right now.
Tips
Tip #1
Connect with care
Reaching out to friends and family is a great way to reconnect and build a support system for yourself. But explaining what you go through can be hard.
Try preparing by answering these questions.
1. What is your “normal”?
2. When do you feel most in need of support?
3. What might they already do that helps you?
Tip #2
Quiet your mind
Chronic disease can take a toll on your mental wellness. You can help soothe nerves and an anxious mind by practicing mindfulness exercises, such as mindful breathing and meditation. Consider adding the following practices to your routine a few times a day:
Focus on the moment
Take slow, deep breaths
Fill your lungs and breathe out slowly
Tip #3
Symptom check
You can try this massage technique to temporarily relieve the discomfort associated with swelling.*
Start at your foot
Stroke upwards toward your heart (this will help move accumulated fluid)
Repeat this until you have done it for all affected limbs
You can also have a friend or partner do this for you
*This technique will not permanently remove the edema or treat the underlying disease.
For more guidance, be sure to consult with your doctor.
Patient portrayal.
What’s next?
We are committed to meeting you where you are
The resources we’ve prepared have been made with you in mind. Use them and bring them to your next doctor’s appointment.
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