NoDa Pioneer Ruth Ava Lyons Turns to Community in Health Battle
Lyons seeks kidney after polycystic diagnosis
Ruth Ava Lyons, one half of the duo credited with founding north Charlotte’s NoDa arts district in the late-1980s and early-’90s, has reached out to the community for help as she battles polycystic kidney disease, a diagnosis that has led to major health struggles in recent months and would require a kidney transplant to treat.
“Polycystic disease has taken away family members one by one and has been progressively deteriorating my health,” Lyons wrote on a website she launched to help find a kidney donor. “I am looking for a living donor for a kidney that will SAVE MY LIFE.”
Polycystic kidney disease (PKD) is an inherited disorder in which clusters of cysts develop primarily within your kidneys, causing them to enlarge and lose function over time, according to the Mayo Clinic.
It’s not uncommon for people to have polycystic kidney disease for years without knowing it. Symptoms include high blood pressure, back or side pain, blood in the urine, a feeling of fullness in the abdomen, increased size of the abdomen, headaches, kidney stones, kidney failure, and urinary tract or kidney infections.
Lyons is currently placed on a kidney waitlist that consists of nearly 89,000 other people as of Jan. 30, according to the Health Resources and Services Administration. However, finding a voluntary match would allow her to bypass that list.
Lyons is in need of a B+ kidney, meaning she can accept donations from people with B or O blood types. However, if she were to find a willing donor, regardless of blood type, Ruth and that person could potentially participate in a paired kidney exchange, which would partner them with another mismatched pair in the same situation, allowing both patients to receive healthy kidneys.
On her site, Lyons reminds potential donors that, while most people are born with two kidneys, you only need one to live a healthy life, as the remaining kidney enlarges and is able to carry function at 75-80% of the capacity that the two originals once did together. Recovery for a kidney donor usually takes around two to three weeks, according to Weill Cornell Medicine, though people with more physically taxing jobs may be out of work around twice that time.
Lyons stated that the cost of any evaluation and surgery would be covered by her health insurance plan, as would potentially any travel expenses and lost wages.
“At the very least, I want to bring awareness to organ transplant and living donation,” Lyons wrote on her website. “It is hard for me to ask someone for this BIG GIVE, but hopefully it will give us both new meaning and purpose and change us in ways I cannot even imagine.”
North Charlotte pioneers
When Lyons and her longtime partner, sculptor Paul Sires, arrived in Charlotte in the mid-’80s, the creative hub we call NoDa today was a dilapidated and neglected mill village known as North Charlotte. Captivated by the area’s character, the couple restored the 1927 Lowder Building and created the first artist establishment, the Center of the Earth Gallery, which they ran for 22 years.
They continued to renovate nearby buildings and millhouses as part of a revitalization effort, offered studio spaces for artists and lobbied to attract arts-related businesses such as The Evening Muse, which still stands today thanks in no small part to them.
More recently, they’ve looked to repeat the effort on East 22nd Street in Optimist Park, where they own a number of properties that serve as artistic incubators such as X Foundation artist and design studios and Rock on 22nd, which houses Pachyderm Music Lab and We Rock Charlotte.
In December 2021, the couple opened Starlight on 22nd with their son, Orion Sires, located along the same stretch where their other properties are located and sandwiched between high-rise residential construction projects.
“I say all the time, ‘Oh damn. It’s just like what we did 30 years ago,’” Lyons told Queen City Nerve in March 2022. “We’re not off the beaten path, we’re on the edge of all that activity, but in the old days people were scared to come to NoDa and we had to do all kinds of things to try to get them there and now we’re doing the same thing because we’re in between all that construction. No one can see us.”
She hopes to continue to see the creative revitalization of the area through with the help of one person who’s willing to answer her call.
“The lust for life that many have seen in my activities — be it diving, roller skating, travel, or hooping — are ways to take full advantage of the time I have left,” she wrote.
Lyons is currently working with a donor coordinator at Atrium Health named Yvonne Ellerbe, who can be reached at Yvonne.Ellerbe@Atriumhealth.org. Interested parties are asked to read through Atrium’s Living Kidney Donation info packet before filling out a Risk & Benefits form and a Potential Living Donor Referral form.
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