March is National Kidney Month.
Amanda Skeens, of Bordentown, was diagnosed with an incurable rare kidney disease known as RKD, IgA nephropathy. The diagnosis came 15 years ago. She was 31 years old, essentially at the prime of her life.
One of the biggest hurdles Skeens has faced over the years is lack of awareness around RKD.
Throughout her RKD journey, she’s had to overexplain or defend her choices when it comes to things like socializing or food to her work colleagues, friends, and even her family. Like many people with RKD, Skeens felt alone and isolated living with RKD, but eventually found camaraderie and a community via patient advocacy groups.
In a world where millions of people live with chronic kidney disease, known as CKD, little is commonly known about rare kidney disease.
Rare kidney disease often presents with unique symptoms or no symptoms, and can progress to end-stage kidney disease, which requires dialysis or kidney transplantation to survive, much faster than other forms of kidney disease. This can make the experiences of people living with RKD substantially different from those living with other forms of kidney disease.
RKD is all-encompassing and intersects with every facet of an individual’s life including relationships, career, family planning and more. Skeens’ hope is that other people living with RKD find a community. She has devoted her life to patient advocacy and serves on the leadership board for the IgA Nephropathy Foundation as their director of Patient Support & Volunteer Programs.
Skeens leads community outreach and is currently working on connecting fellow kidney warriors and caregivers across the U.S. and Canada for monthly patient support groups. She has also joined the RKD & Me campaign as a campaign ambassador to tell the world for the first time what living with RKD is actually like.
RKD & Me is a new multi-year campaign created as a collaboration by IgA Nephropathy Foundation, Travere Therapeutics and NephCure Kidney International that puts rare kidney disease front and center and further establishes the acronym, RKD. It aims to create more awareness and understanding of the unique experiences of people living with RKD.
Below we interviewed Skeens to learn more about her story.
How were you diagnosed with IgA nephropathy?
I was diagnosed with IgA nephropathy (IgAN for short) through a routine physical by my primary care physician. I was flagged for IgA nephropathy due to the out-of-range high protein in my urine called proteinuria. My rare kidney disease, or RKD, was confirmed when I was sent to a nephrologist for a kidney biopsy. IgAN is one of many RKDs.
How old were you when you were diagnosed?
I was 31 years old when I was diagnosed with IgA nephropathy. Early in life, I was never a person that chose to go to a doctor unless I felt something was severely wrong. At the time, a friend at work had jokingly said to me, “You need to start taking better care of yourself because as you get older you will find you are predisposed to many new ailments.” I continue to thank that friend for convincing me to get that routine physical. I am grateful that my RKD was caught early on and that I was in remission for 11 years. Many people are diagnosed with RKD later in the course of their disease when the kidneys are already more damaged.
Did you experience any symptoms before diagnosis? Can you talk about any challenges you have encountered?
I had no symptoms of my disease leading up to my routine physical, but once I was diagnosed, I found it very hard to find information about this rare disease at that time. Fortunately, today there are many more resources for newly diagnosed patients from the IgA Nephropathy Foundation. Another challenge that I have suffered from is the unpredictable nature of IgA nephropathy, and that takes its toll on me physically and emotionally. Knowing there is no cure can make me feel “helpless and hopeless.” An example is the impact of lab work. I can be thinking everything is going all right physically and mentally, and then get my labs drawn and discover a slow or rapid decline in my kidney function. This is a common scenario for people with RKD and having a strong support system in place is so critical – this community is very special and comes together to uplift you and ensure you don’t feel alone often in the times you need it the most, and that’s so important for my mental health.
Can you talk about your involvement with raising awareness about RKD and what your goals are for people who are not aware of the disease?
I want to raise awareness about IgA nephropathy and other RKDs to make it easier for all of us living with RKD to feel understood, and for newly diagnosed people to be able to find support. Millions of people live with chronic kidney disease or CKD, but rare kidney diseases do not get much attention. RKD, like IgA nephropathy, is invisible, and not easy to talk about. Through the RKD & Me campaign, I shared my story from the day I was diagnosed to the present day, reflecting on my journey. If someone is reading my story on RKDandMe.com who recognizes some of their own experiences in it and feels less alone on their RKD journey, then I’ve achieved my goal. If there is someone who has a friend with RKD but finds it hard to understand what their friend is going through, I hope they check out RKDandMe.com to gain a little more understanding from the stories there.
Is there anything else you would like to add?
In 2020, I joined the IgA Nephropathy Foundation, a partner of the RKD & Me campaign, based in Wall, Monmouth County, as a volunteer to help others in our RKD community. Since my diagnosis, I’ve had to adjust my life to all the decisions that I make daily because of this disease. I am very grateful that I have been able to live a great life because I know I can lean on my rock, which is my husband Don, who has been with me on this journey since day one. I want people living with RKD and their loved ones to know they are not alone. You are stronger than you’ll ever know.