A new awareness campaign called RKD & Me has recently kicked off with the goal of spreading awareness of rare kidney disease (RKD). The project is a collaboration between the IgA Nephropathy Foundation, Travere Therapeutics, and NephCure Kidney International. The principal goal of the campaign is creating awareness of what it’s like to live with a rare kidney disease and in doing so further establish the terms ‘rare kidney disease” and the acronym “RKD.” Much like chronic kidney disease, the term rare kidney disease is intended to cover a range of conditions that lead to similar symptoms and a decline in kidney function.
To learn more about this project, Patient Worthy spoke with Amanda, an ambassador for the campaign. She also lives with the rare kidney disease IgA nephropathy.
About IgA Nephropathy
IgA nephropathy, which is also known as Berger’s disease or synpharyngitic glomerulonephritis, is a rare disease which affects the immune system and the kidneys. It is characterized by the inflammation of the glomeruli, a network of capillaries found in the kidneys. In severe cases, the skin and liver may also be affected by the disease. The exact cause of IgA nephropathy is not fully understood, but evidence suggests that the immune system probably plays an important role. Symptoms of the disease include blood in the urine, often triggered by an earlier upper respiratory tract infection. Other symptoms include discolored urine, severe flank pain, swelling in the hands and feet, immune system problems, and elevated blood pressure. Kidney failure is possible in the aggressive variant. Treatment may include angiotensin receptor blockers (ARBs) steroids, cyclophosphamide, and dietary changes. To learn more about IgA nephropathy, click here.
“I was diagnosed with IgA nephropathy at the age of 31. I found this diagnosis through a routine physical, I didn’t have any symptoms when my diagnosis came.”
Amanda’s illness was found as a result of excess protein in her urine, a condition called proteinuria. A biopsy confirmed the diagnosis. In the first eleven years following this news, Amanda’s nephropathy was effectively in remission. However, things began to change in 2018:
“I had my first kidney flare-up. This was due to being overly stressed at work.”
This was the first time that Amanda had to face the symptoms, which included physical and mental fatigue, and the experience dealt a blow to her mental health. She was forced to begin to advocate for herself. The following year, she learned about the IgA Nephropathy Foundation.
“In 2018 I went through some treatments and wound up getting back some of my kidney function that I had lost.”
The looming threat of kidney failure prompted her to change nephrologists and get access to higher quality care. While she has been stable since 2019, Amanda has been on the brink of receiving a transplant, having gone through three transplant evaluations.
As part of the campaign, Amanda and 17 other patients and caregivers wrote letters to their younger selves about when they were diagnosed with a rare kidney disease.
“I really thought at 31 that this was a death sentence, knowing that there’s no cure for something that you have; you have no idea how your body is going to react.”
Amanda hopes that the campaign will help patients understand that their feelings and concerns are valid and that they are not alone.
RKD & Me will be a multi-year campaign to bring awareness to rare kidney diseases, of which at least 150 have been identified. The letter writing project is accompanying the launch of the campaign. If you have a connection to the rare kidney disease community, then you are encouraged to write and submit your own letter at RKDandME.com.