Sponsored by Travere Therapeutics
A rare disease diagnosis can completely change the trajectory of someone’s life. While it is undoubtedly difficult to navigate, it also holds the potential to uncover unexpected perspectives and passions. For a young and vibrant student, it did just that.
Fallon, from Chicago, was just a sophomore in college when she was diagnosed with focal segmental glomerulosclerosis (FSGS), a rare kidney disease (also known as “RKD”). “I was very scared when I was diagnosed. I didn’t know what my diagnosis meant and how it could affect me for the rest of my life. At the time, I was active and healthy, so I didn’t know what was going on or what to expect. I dealt with my diagnosis one day at a time, with some days being really tough,” she remembers.
Fallon’s diagnosis was life-changing: in the span of a few short years, she went from being your typical healthy college student to requiring dialysis to combat the progression of her RKD. If being a full-time student and working a part-time job were not enough to handle, Fallon was now forced to juggle up to 12 hours of clinic appointments for dialysis each week.
As a result of their lower incidence rates, there is still much to be understood about rare kidney diseases. Focal segmental glomerulosclerosis, or FSGS, is characterized by scarring and dysfunction of the part of the kidneys that filter blood. This results in kidney damage and, over time, may ultimately cause kidney failure. Rare kidney diseases, like FSGS, have been known to impact younger populations – including those in their teens and twenties – whereas more common forms of kidney disease are typically known to present in adults ages 60 and older.
While FSGS has a number of causes, it is often hereditary and can be attributed to the APOL1-gene, which only occurs in individuals of African or Caribbean ancestry. In turn, FSGS more commonly affects African Americans: they are four times more likely to be diagnosed with this rare kidney disease in comparison to the general population. This disproportionate impact means visibility and education surrounding FSGS and other rare kidney diseases are critical within the African American community, supporting accurate diagnoses and proper care.
For Fallon, who has a family history of FSGS, spreading awareness of RKD is imperative. Her experience with RKD inspired her to pursue a career as a dialysis nurse, giving her an opportunity to educate other kidney patients first-hand. “I hope to spread awareness of RKD so that other people can be better equipped and empowered – so they can know more, and do more than I did when I was diagnosed,” she says.
One area Fallon focuses on in her conversations with people is distinguishing RKD from other kidney diseases, especially in its causes and risk factors. While most people know that diabetes and high blood pressure can cause chronic kidney disease (or “CKD”) later in life, rare kidney diseases can affect anyone of any age and may be attributed to hereditary or genetic causes.
“When you have RKD, there is a different standard for conversations as compared to other kidney diseases: there are unique questions and discussions that you're going to have with your doctor and family. I really want to raise awareness of that. Nine times out of ten, people have not heard of FSGS, but when I tell them my mother and aunt had it, they start thinking about their own family histories.”
Fallon has also learned the importance of advocating for her community and using her experience to support and uplift others living with rare kidney disease. She is part of RKD & Me, an initiative launched by those with RKD in partnership with Travere Therapeutics, the IgA Nephropathy Foundation and NephCure, with the goal of increasing awareness of RKD through the real stories of people living with it.
“When I was diagnosed [with RKD], I wished I had someone to talk to, someone who could tell me what to expect. By sharing my experience, I want others living with RKD to know they are not alone. There are many of us out here, from different walks of life, coming together to spread awareness.”
Fallon urges everyone to do their own research into kidney diseases, talk to their doctors if they are experiencing any health symptoms, and have early, open conversations about potential hereditary conditions with family members.
To read more about Fallon’s experience with rare kidney disease and others’ stories, visit www.RKDandMe.com.