AAKP’s National Patient meeting is an annual convention held in a different city each year, with the exception of the virtual conferences in 2020 and 2021 due to COVID-19. The meeting offers a diverse lineup of expert speakers from across the kidney community as well as an extensive exhibition hall that allows participants to learn about kidney organizations by interacting directly with them. This event is the largest gathering of kidney patients of its kind and is in its 46th year of success. In this patient profile article, AAKP Ambassador Sharron Rouse explains why you should participate in this year’s virtual National Patient Meeting in September.
Sharron was diagnosed with kidney disease in 2006. She woke up one morning before work with painful, swollen legs. As a school counselor, she had long days and was often on her feet. She thought the leg swelling might have been from an extra-long day at work. She attempted to get herself ready to go to work that morning but ended up going to the emergency room (ER). At the ER, she was told her kidneys were failing. At first, she and her doctors thought her kidney failure could be related to her previous lupus diagnosis. In 2003 she had swollen hands, fatigue, and a positive antinuclear antibodies (ANA) test, and was given the diagnosis of lupus. However, after her kidney biopsy at John Hopkins University Hospital, the kidney cell pattern did not match with lupus, but instead she was diagnosed with focal segmental glomerulosclerosis (FSGS). The doctors told her that FSGS may have been something that she has had for many years, and it had laid dormant. In fact, she remembered being told while having bloodwork done while in college that “some protein was spilling into her urine.”
She was able to keep dialysis at bay for about six years. She started hemodialysis in-center in 2012 and later did peritoneal dialysis. Sharron’s younger sister Shonté was determined to be a blood match for a kidney transplant. However, the process of the donation had bumps in the road and took a year to clear. On December 2, 2013, the kidney transplant operation took place. Shonté’s kidney was a 6-antigen match, and the kidney transplant surgery went beautifully.
Sharron (center) with Carolyn Feibig and Dave White at the 2018 AAKP National Patient Meeting in Florida. Sharron attended the session they led on Living Well with Kidney Disease.
As a new kidney transplant recipient, Sharron started following the kidney community online. She was inspired by kidney warrior and AAKP Ambassador Dave White, who posted on social media about traveling and speaking engagements for kidney patients. She learned that he lived in the same area and reached out asking him how she could get involved in advocating for kidney disease. He directed her to the ESRD Network in her area as well as AAKP.
Sharron became an AAKP Ambassador and in 2018, made plans to attend AAKP’s National Patient Meeting in St. Petersburg, Florida. At the National Patient Meeting she went to round table discussions hosted by kidney experts, attended educational sessions, and connected with fellow kidney patients. “I was in heaven…it was everything I had craved while I was on dialysis but did not know how to achieve,” Sharron said. She says she met kidney patients, doctors, scientists, social workers, renal nutritionists, and her fellow AAKP Ambassadors. She was so impressed by so many people in one place working to advance kidney health. She vowed to get more involved in kidney advocacy after that meeting.
Sharron volunteered to attend AAKP Hill Days, where Ambassadors team up with healthcare professionals and share their kidney journeys with lawmakers in Washington, D.C. She also started a non-profit organization of her own called Kindness for Kidneys International, Inc.
When the next AAKP National Patient Meeting was being planned for Washington D.C., in 2019, Sharron was asked to be a session speaker. She was also on the planning committee and signed up to be a booth exhibitor for her non-profit in the exhibition hall. Sharron says at this National Patient Meeting, she gained even more knowledge and connections. “I met so many patients wanting to be changemakers in their communities,” she said.
The educational session that Sharron hosted was called “Building a Local and Online Community.” She spoke with fellow patient, AAKP Ambassador, and Board Member Jennifer Jones and shared her story on how she how she started Kindness for Kidneys International, Inc. She encouraged patients in the audience to do the same and gave tips on how she uses social media for advocacy.
As an exhibitor, Sharron remembers connecting with AAKP Ambassador Janice Starling, who runs the All Kidney Patients Support Group in St. Petersburg, Florida. She said she gained so much wisdom from her and many others that she met at the conference. She felt like she had a ew kidney family by the end of the National Patient Meeting. “It felt like a family reunion to me,” she told AAKP.
In 2020, the AAKP National Patient Meeting went virtual due to COVID-19. Sharron remembers feeling grateful that the meeting was being held so they still had a way to learn and connect. Of course, she would have rather connected in person with hugs and over lunch or dinner, but the virtual platform did its job. She enjoyed using the chat feature and seeing what others were saying about the sessions. She also loved the convenience of a virtual meeting. She said it was nice not having to arrange for travel or figure out the finances of a trip. The meeting included all the educational sessions with powerful speakers, an exhibition hall where participants could interact with various kidney organizations and industry representatives, and an award ceremony where Sharron and her Kindness for Kidneys International, Inc. won the AAKP National Kidney Patient Support Group of the Year Award.
The 2021 AAKP National Patient Meeting will again be virtual this year for everyone’s continued safety. Sharron encourages all kidney patients to not only register for free and participate in this virtual meeting, but to also join AAKP as a FREE member. “It’s so easy to attend–just open whatever smart device you have and watch from anywhere!” she said. “If you cannot watch live, it’s just as easy to go back and replay a session OnDemand you may have missed.”
Registration is now open for AAKP’s 46th National Patient Meeting taking place September 24-25, 2021. This event is free and offers sessions for everyone–patients, caregivers, friends, family, and professionals. Sign up today at bitly: https://bit.ly/AAKPNationalPatientMeeting2021 or call 800-749-2257.
Learn more about Kindness for Kidneys International, Inc. on social media by following @KindnessforKidneys.
This article is from aakpRENALIFE July/August 2021.