In 2007, Amanda Skeens went in for a routine physical and was diagnosed with stage one Immunoglobulin A Nephropathy (IgAN), or Berger’s disease. IgAN is a rare, autoimmune disease that causes inflammation and kidney damage by impacting how blood is filtered in the small blood vessels of the kidneys. Twenty to forty percent of people diagnosed with IgAN will go on to develop end-stage kidney disease.
Amanda had been pretty healthy up until her diagnosis, which was a wake-up call to her.
“My mind immediately went to dialysis and transplant. I was terrified.”
Fortunately for Amanda, her disease stayed in remission for eleven years. There were no symptoms and her test results remained stable. But then things changed. She had a flare-up of symptoms. “I felt fatigued and anxious. What I thought I had under control was clearly not anymore. It really hit me hard. My nephrologist seemed unconcerned so I decided to seek another opinion.”
Amanda’s new doctor was aggressive in her treatment. He tried many different medications and treatments to find the right one to get her lab readings back to stable. “I saw IgAN peers who were taking other medications eventually crashing.”
She realized that you truly needed to advocate for yourself to best navigate the medical system. “I became a volunteer at the IgA Nephropathy Foundation to help others learn from my journey. I am now a Patient Ambassador for New Jersey.”
The next few years were a blur of lab tests, doctor’s visits, transplant evaluations, and new symptoms. “I suddenly had tingling in my arms for the first time. I thought it was stress-related. I started seeking out a living donor because I was dead set against undergoing dialysis.”
She was also feeling more isolated from her friends and colleagues who didn’t understand what she was going through. “If my head was shaved, people would know I was sick. But I looked OK. All the symptoms, fatigue, medications, constant testing and fear weren’t apparent to them. They often asked: ‘Why aren’t you participating in this activity – why can’t you eat that?’”
Then Amanda went to an IgAN conference and instantly felt more comfortable being around others living with the disease. “These people get me. They understand what no one else seems to.”
She began her search for a living donor but because she was adopted finding a related family member would be challenging. Her husband passed the first round of tests but ultimately was not a candidate. “Going public in my search for a donor was the most vulnerable I’ve ever felt in my life. Putting all of this out there about my illness was a tough decision for me.”
Out of the blue a cousin stepped up as a donor and he was a match. He said that his mom (Amanda’s dad’s sister) would have wanted him to do this. He felt it was his calling. “I have such gratitude for this gift. It shows so much about a person who is willing to make such a sacrifice. It was wonderful.”
Amanda has been maintaining her lab readings and health but she is aware her current health status may not last forever. “To have a living donor ready, willing, and able, to know I will not face the difficulties of dialysis, has provided me some peace.”
And what has Amanda learned from this journey?
“You have to stay in front of things and always be advocating for yourself, all the time. But now I stress less, I don’t worry as much about things I can’t control. And I definitely make sure that they do not control me.”