Being told you have a chronic kidney disease can feel overwhelming, especially when it’s a rare condition that few people have heard of. That was the reality for Sherry, a mother of two, when she was diagnosed with IgA nephropathy more than 20 years ago. In a video shared by the American Kidney Fund Rare Kidney Disease Action Network, Sherry recounted her journey, from the shock of diagnosis to the power she found in connecting with others who truly understand.*

Her story is a reminder that no matter how rare your condition feels, you don’t have to go through it alone.

The Shock of Diagnosis

In 2001, while working as a teacher’s aide, Sherry began experiencing dizziness and shakiness. A routine blood pressure check revealed levels over 200—dangerously high. At the emergency room, tests showed something was wrong with her kidneys.

A biopsy confirmed IgA nephropathy, a disease where the immune system’s proteins attack the kidneys themselves. Sherry had never heard of it before, and leaving the doctor’s office that day, she broke down in her car.

“I just sat and cried, thinking: What am I going to do now? I have two kids, and they need their mother.”

Choosing Strength

In that difficult moment, Sherry made a decision: she was going to be strong and fight for her life. Over the next 23 years, she endured health complications related to IgA nephropathy. At times, she wished effective treatments had been available earlier to prevent some of the struggles she faced.

But she refused to let her diagnosis stop her. “I was determined to keep living my life, because it wasn’t going to stop me,” she said.

Discovering the Power of Community

For many years, Sherry faced her rare disease without ever meeting another person who had it. Recently, she joined a group through the American Kidney Fund Rare Kidney Disease Action Network and finally met others with IgA nephropathy.

The experience was transformative. “Other people had the same symptoms I’ve been dealing with for years,” she explained. One woman in the group had just been diagnosed three months earlier, and Sherry was able to encourage her by pointing out that new treatments are now available.

“Having a community of people who understand what you’re going through—it makes such a difference,” she said.

Advice for Others

Sherry encourages anyone with CKD, especially those with rare diseases, to:

• Seek multiple opinions. Don’t stop with one doctor’s perspective.
• Don’t give up. Keep searching for the answers and treatments that can help.
• Find a community. Support groups provide knowledge, comfort, and hope.

“I am a stronger person than I was in 2001, because I’ve had to be. I’ve had to be a fighter—it’s my life, and I have to get through it.”

Communities Make the Journey Easier

Sherry found strength through the American Kidney Fund Rare Kidney Disease Action Network. And if you’re living with CKD, whether it’s IgA nephropathy or another form, you can also find support and reliable information through Responsum for CKD, our free online community.

Share Your Story

Sherry’s courage reminds us that while CKD can bring challenges, you are never truly alone.

👉 How has CKD changed your life? What communities or resources have helped you most? Share your story in the comments; your voice may be exactly what another patient needs to hear today.

*American Kidney Fund (YouTube). (February 12, 2025) “Sherry’s IgA Nephropathy Diagnosis Experience | AKF’s Rare Kidney Disease Action Network” https://www.youtube.com/watch?v=yQLJWcwVKU4

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