Oct 27, 2022
Patient with Rare Kidney Disease Leverages Social Media to Raise Awareness and Find Living Donor
Credit/Permission: Taiylor Kriss

At 23 years old, Taiylor Kriss is dependent on dialysis treatment to stay alive.

When she crashed into dialysis in November 2021, she had no idea what the future had in store.

“I was always kind of prepared for kidney failure, but I didn’t know exactly what that would look like,” Taiylor says. “You hear about dialysis but you don’t really know what all of that entails until you’re experiencing it firsthand.”

Taiylor was diagnosed with Alport Syndrome—a rare genetic disease characterized by progressive kidney disease and abnormalities of the inner ear and eye—when she was just 18 months old.

Alport Syndrome causes kidney damage by attacking the glomeruli, which are the tiny filtering units inside the kidneys. The disease accounts for [i]0.2% of adults with kidney failure in the United States, and is most common in males.

The first sign of a health concern came when Taiylor’s daycare provider contacted her mother, Meaghan, to inform her Taiylor’s urine was discolored.

“We immediately took her to the doctor, and it was a hustle from that point on,” Meaghan recalls. “I broke down in the hospital when we heard the diagnosis and learned she was going to experience kidney failure in the second decade of her life.”

Growing up, Taiylor managed her health with the help of her mother—a pediatric nurse. She went in for routine lab tests and often participated in research studies to help health experts better understand how Alport Syndrome affects females.  

In October 2021, she began experiencing symptoms of kidney failure. She felt lethargic, had itchy skin and rashes and experienced high blood pressure. By the following month, everything came to a halt.

“One day I woke up and I felt like I was moving through tar. My body felt swollen and heavy—I think I had every symptom possible of kidney failure,” Taiylor says.

Finding Support Online

When Taiylor started dialysis in the hospital last fall, she took to social media and discovered a vast CKD community on TikTok and Instagram where people affected by kidney disease support one another.

“Kidney disease can be so isolating,” Taiylor says. “I resorted to social media because I wanted to connect with people who understood me and what I was going through. I saw it as a way to learn and teach others about kidney disease.”

During this time Taiylor was out of the hospital and receiving in-center hemodialysis at DaVita Ballenger Creek in Maryland before transitioning to peritoneal dialysis (PD) in March 2022, which enables her to treat at home. Taiylor also started thinking about kidney transplantation. For people with kidney failure, a kidney transplant is the only treatment option to sustain life without dialysis.

The process of being added to the transplant waitlist began when Zina Curtis, Taiylor’s social worker, recommended Taiylor to two transplant centers in Maryland. Curtis also asked Taiylor whether she had someone who would be able to donate a kidney to her.

“[We] always talk to patients about living donation,” Curtis said. “I always ask if they think they have a living donor because there is clear research that shows the advantages of living donation compared to cadaver transplantation.”

Pursuing a Kidney Transplant

Nearly 100,000 people are currently on the waitlist for kidney transplantation. A variety of factors can affect how long someone must wait for a kidney, but the average wait time is three to seven years.

Living donation offers an alternative path to transplant. Through living donation, transplant candidates can find someone who is willing to provide them with one of their kidneys as people only require one kidney for healthy, normal function. The process requires health screenings and tests to identify whether the person interested in donating is a match for the recipient.

For kidney donors, the usual recovery time after surgery is short, and most donors go on to live happy, healthy and active lives.

Resources like DaVita and the National Kidney Foundation’s (NKF) program within The Big Ask: The Big Give platform were designed to help patients share their stories and spread awareness about looking for a living donor.

Additionally, among participants in NKF’s Finding a Living Donor program in 2022, 61% shared their story on social media, according to data provided by NKF.

“One of the best ways for a patient to share their story and reach as many people as possible, is through social media,” Kelley Canavan, NKF’s patient programs director said. “NKF encourages patients and everyone in their circle to continue sharing, because you never know who will end up reading it and make the selfless decision to donate.”

Sharing Her Story and Finding Hope

In late January, Taiylor posted her story to her TikTok account and shared her request for a living donation. She continues to amplify her voice on social media and is often on TikTok answering questions from followers about her health journey and life on dialysis.

For Taiylor, her presence on social media isn’t just about raising awareness and helping others with kidney disease. It’s also a form of coping.

“There are so many people out there grieving past versions of themselves and what their life used to be,” she says. “They’re in shock that their kidneys have failed and this is what their life has come to. That can be a hard place to get out of.”

In March, Taiylor was contacted by a woman in Oregon who saw her story on TikTok. The woman expressed her interest in being Taiylor’s donor.

“I was so amazed,” Taiylor says. “I really respected that she reached out to me before she fully committed to applying, getting blood work in and all of that.”

Since then, Taiylor and her potential donor have been undergoing tests and gradually moving through the living donation process, which can often take several months.

“It’s probably the biggest gift you can give someone,” she says. “Just knowing there are people out there who genuinely want to help a stranger, that’s a powerful thing.”

[i] National Organization for Rare Disorders (NORD). Alport Syndrome. Published 2020. Accessed February 2, 2021. https://rarediseases.org/rare-diseases/alport-syndrome/