Caregiver Support

For Caregivers and Care Partners

If you care for or support someone with IgA Nephropathy, chances are you’ve worried and in search of answers and resources to help as you navigate the journey. It’s not easy. At times, it can be downright scary, especially given the uncertainty that comes with IgA Nephropathy and how it might progress. The burden of caregiving can be exhausting and isolating at times. 

The good news is you are not alone. The IgA Nephropathy Foundation recognizes the vital role caregivers and care partners play in helping loved ones manage and live with IgA Nephropathy. As such, we have developed an array of resources to help. Read on to learn more…

What You Can Do

Learn about IgA Nephropathy

Become a member and explore igan.org to get trusted information about IgA Nephropathy, what to watch for, and how to best manage it, including available clinical trials.

Find your support system and connect with other caregivers.

Our Virtual Care Partner Support Group meets the third Tuesday of every month from 7-8:30 p.m. ET. We’ve created a safe space to come together, share experiences and offer comfort and guidance. Check out our Patient + Care Partner Support page.

Remember, caregiving starts with self-care. Don’t neglect your own needs or push yourself to exhaustion.

Often times, caregivers and partners go-go-go and don’t realize they are running on empty. Use our worksheet to take stock of how you are coping and what you are doing – or not doing – to take care of yourself and refuel. Learn how to practice self-care to maintain your mental, physical and spiritual health.

View The Worksheet Here

Find positive ways to cope. Looking after yourself and your needs is an important part of the journey.

Read our 10 Tips for IgAN Caregivers and Care Partners for ways to keep perspective and tend to your own needs so you can be healthy and in a good place for your loved one. 

View The 10 Tips PDF Here

Talk to your medical care team and peers to understand and accept what you can control and what you cannot.

Bookmark this page and check back for updates.

Read “I was there…,” Reflections of an IgAN Caregiver By Steve Mayo.

I was there the first time you said,

“I don’t feel good.”

I was there when your urine turned the

color of raw berry juice.

I was there when the vomit erupted from your

throat, like a horror movie only this was real.

I was there when the doctor was unsure of the diagnosis.

I was there when we discovered that this was an incurable disease.

I was there for the years that followed, when we chose not to believe.

I was there when your kidneys began to fail, stage 2, stage 4, then stage 5.

I was there when you told me, you were scared and you didn’t want to die.

I was there when dialysis became part of our lives, and we learned new medical terms. 

I was there when friends and family, learned of our fight. 

I was there when some joined us and some literally took flight. 

I was there when the years rolled by, and your health continued to decline. 

I was there trying to keep us strong while our dreams fell far behind. 

I was there when you found the Foundation that gave us the tools to succeed.

I was there when they put you on the transplant list, and looked for a possible donor. 

I was there when they took you off the list cause cancer had now been discovered.   

I was there when surgery removed the kidney that had the cancer inside. 

I was there months later when they said you were now cancer-free, and placed you back on the transplant list.

I was there when you got the call. You said “Babe, they found a kidney for me.”

I will be there for all our journeys.………….

YOU……. THE KIDNEY……. AND ME.