Sponsored by Travere Therapeutics
Tiffany is a wife, mother of four and the owner of a successful full-service workplace culture solutions business based in Baltimore.
As a savvy, self-made fitness entrepreneur, she was accustomed to a non-stop schedule, teaching several spin, dance and high-intensity interval training classes each day. Tiffany thrived in her active lifestyle. "Working out was not just something that I did as a profession, but something I also did every day for my own health. It was my way of maintaining my physical well-being and mental clarity and staying focused on my goals.”
A few years ago, Tiffany started to sense that something was not right with her health. The constant fatigue she was experiencing – among other symptoms – progressed to the point where she could no longer walk down a flight of stairs on her own.
After a few investigative doctor appointments, Tiffany was diagnosed with a rare kidney disease (also known as “RKD”), specifically FSGS. Focal segmental glomerulosclerosis, or FSGS, is characterized by dysfunction of the part of the kidneys that filter blood, resulting in irreversible kidney damage. If you have never heard of RKD, you’re not alone. Due to low incidence rates, there is little public awareness of rare kidney diseases.
Tiffany’s diagnosis was life-altering. The constant uncertainty – not knowing how she would wake up feeling each morning – meant she could no longer pursue her passion for fitness in the way she once did. Daily workouts were replaced with lab tests, and spending the day outdoors now came with the trade-off of being confined to bed for several days following. None of her training and experience in helping people achieve their health and fitness goals proved helpful to her. She felt a sense of overall helplessness that many living with a rare kidney disease may understand because, by its nature, it is a condition that does not have many proven answers.
“It’s taken me some time to mentally adjust from what I was able to do before, to what I can’t do now. I’m living with a disease that is rare, in a body that feels foreign to me. Everything that I once knew about myself, I no longer know,” she says.
But Tiffany was determined to make the most of her situation and has since embraced a new perspective on life. Her experience has inspired her to stay grounded, open-minded, and flexible in the pursuit of her passions. She puts her health first and has become even more attuned to her body, responding when it signals the need to slow down and rest.
Most importantly, she is giving herself grace. “The biggest thing I try to do day to-day is release the illusion of control. I’ve had to learn how to ‘go with the flow’ and release that control, because I know everything in life is continuously going to change, and that is okay.”
Since her diagnosis, Tiffany has pivoted her business to focus on professional workplace training, and also found a new passion – one that allows her to support others facing similar hardships. By sharing her own experience with RKD, she has helped others with the disease feel empowered, understood and connected. Tiffany is part of RKD & Me, a campaign co-created by those living with RKD as well as Travere Therapeutics, NephCure and IgA Nephropathy Foundation, with the goal of increasing awareness of rare kidney disease.
RKD & Me is unique in the way it seeks to bring attention to the disease: through poignant letters penned by those living with rare kidney disease to their younger selves. Tiffany’s letter includes her favorite quote, “this too shall pass” – a reminder to be fully present in the moments she is in, because everything is temporary. “Knowing that my story can help someone else living with RKD is important, and hopefully [my letter] will help them get through the bad times, and really embrace good times. It may not be easy, but it will be okay.”
To read more about Tiffany’s inspiring experience with rare kidney disease, visit www.RKDandMe.com.