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When you live with IgAN, your challenges can take many forms
We’ve carefully developed some resources to help you navigate them.
Monitoring and Management
Feeling unheard
Do you feel like your doctor isn’t seeing the full picture of your day-to-day life with IgAN? Our Productive Appointments Guide may be able to help.
Uncertainty with IgAN
“I am also fighting symptoms…We need to stop the problem at the source.”
— A real patient with IgAN
We’re here to offer resources and support that may help with the uncertainty you may feel.
Sign up and stay connected
Patient portrayal.
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.
Lost in the words
Keeping track of things like lab numbers and talking with your doctor about them is important. But understanding medical terms can be hard. To demystify some of the jargon, we created a glossary of frequently used terms.
Everyday Life
Physically fine, but not okay
In the early stages of IgAN, it can be common to feel no symptoms. If your IgAN has progressed, and you’re feeling unwell, it may cause you to feel like you can’t participate fully in everyday life. See the Productive Appointments Guide.
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.
Patient portrayal.
Tools for everyday life
Having a rare kidney disease can make it frustrating to navigate your day-to-day activities. Our guide may help.
If you or a loved one is living with IgAN, check out some tips for managing diet, exercise, and more.
Emotional and Mental Well-Being
Feeling alone
Can the difficulty of maintaining your relationships while managing IgAN be isolating?
Reaching out to other people living with IgAN may help. After facing similar challenges, they could provide you a deeper level of understanding and community.
Try joining some IgAN support groups. We’ve put together a list of them for you.
Patient portrayal.
These patients received compensation from Novartis Pharmaceuticals Corporation for their time.
Stronger Than My Struggles
Dealing with a rare kidney disease like IgAN can take a toll on you. But there are ways to find support.
Hear from others with IgAN about their struggles and how they’ve managed to get through it.
Living Well With IgAN
We hope these resources and tips help you on your journey.
Staying calm
Living with IgAN 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
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
Some people may experience edema or swelling. Consider this massage technique to help 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 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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