(BPT) – As a professional communicator, words have always come easily to María. That is until the diagnoses of two different rare kidney diseases that left María speechless.
Many people know what chronic kidney disease (CKD) is, but few people have heard of rare kidney disease (RKD). María lives with two different forms of RKD: IgA nephropathy (IgAN) and focal segmental glomerulosclerosis (FSGS). IgAN, one of the most common forms of RKD, causes inflammation in the kidneys, damaging their function over time. FSGS is characterized by the development of scarring in the kidneys. Both can lead to kidney failure in the prime of life.
An estimated 60-80 per 100,000 people in the United States currently live with RKD. RKDs are often diagnosed when people are younger and can progress faster than other forms of kidney disease. In fact, while people with RKD represent less than 5-10% of people with kidney disease, those with RKD represent upwards of 30% of those with kidney failure. As a result, people living with RKD face unique challenges navigating life with a rare disease. Due to low public awareness, people living with RKD often struggle to explain their condition to others.
A Change to Daily Life
This was the case for María, whose RKD caused many changes to her life in Mayagüez, Puerto Rico. Prior to her diagnoses in her early 30s, María was quite active, balancing a stressful job while raising a family, jumping to social activities, and enjoying travel. But after her diagnoses, she didn’t feel well enough or have the energy to keep up. This took a mental and emotional toll.
She felt alone, misunderstood and worried. Would her RKD cause kidney failure? How could she be there for her children and family? Would she be a burden to others?
Because her physical appearance remained unchanged, many people around her did not understand the impact that RKD had on María’s everyday life. “Unfortunately, if people don’t see something physically different about you, they don’t understand that you have a chronic condition,” she said.
Today, María surrounds herself with people who are helping her enjoy the most out of life, finding that “it is important to surround yourself with positive people” to create the best environment for life with RKD.
Strong Support System
María’s family is an important source of strength. Her mother and partner are two of her biggest pillars of support, and she also has a network of friends who keep her marching toward her goals and hopes for the future. Her father, who passed away years ago, still gives her strength as she remembers how he chose to live life with intensity and joy.
María’s children also motivate her to stay active and prioritize her health. “I want to be an example of perseverance for them, that we can never give up. We have to draw strength and continue with life.”
She also finds camaraderie and community from others living with RKD. “Being able to connect with people who are going through the same thing as me is important,” María said. “Although there are few of us, knowing that I am not the only one gives me the confidence to vent and to ask questions.” And that’s how she grew more comfortable talking about her rare kidneys and felt inspired to share her experience of living with RKD.
Finding Her Voice Again
When María learned about a campaign that aims to increase awareness of RKD through the power of storytelling, she felt like she found the perfect opportunity to tell her story about living with both FSGS and IgAN. Through RKD & Me, a campaign co-created by the IgA Nephropathy Foundation, NephCure and Travere Therapeutics, María penned a powerful letter to her younger self that captured the struggles she faced living with RKD, as well as the strength she found through her journey.
María hopes that by sharing the profound impact RKD has had on her life, she can help someone else living with RKD. “Being able to tell my story may help someone in need or who needs words of encouragement.”
If you have rare kidney disease and want to share your story or want to learn more about the experiences of people living with RKD, including María, visit RKDandMe.com or follow #RKDandMe on social media.
