Local Resident Helping to ‘Strike Out’ Rare Kidney Disease

By Lisa Gentes-Hunt

One local mother is hoping to spread awareness about  IgA Nephropathy, a rare kidney disease, by teaming up with the Boston Red Sox and the IgA Nephropathy Foundation. In a special May 17 event at Fenway Park in Boston, Franklin resident Victoria Bartlett, Ph.d., the Massachusetts ambassador for the national foundation, took part in a “Strike Out IGaN” day as part of a nationwide awareness week. This year, for the first time in the state’s history, Governor Maura Healey issued an official state proclamation declaring May 14 as “IGaN Awareness Day” in the Commonwealth of Massachusetts. 

Bartlett, who works in Boston and has been living with IGaN for more than 20 years, wanted to reach others battling the rare kidney disease, also known as Berger disease, which, according to the Mayo Clinic, happens when germ-fighting immunoglobulin A (IgA) builds up in the kidneys, causing inflammation that, over time, can make it harder for kidneys to filter waste from the blood. The first sign is often blood in the urine.

 “I had a supportive nephrologist, but I never met another patient until after my transplant,” said Bartlett, who is originally from the United Kingdom and who received a kidney transplant in 2021 at Beth Israel Deaconess Medical Center in Boston. 

Bartlett decided to become an ambassador for the foundation to “share my story and give some people hope that you can live with this disease,” she said. “Finding out can be quite scary. It can be traumatic. It’s nice to be on the other side and have a kidney that’s working and doing what it needs to do.” 

Bonnie Schneider, the founder of the IgA Nephropathy Foundation, which has ambassadors throughout the United States and Canada, said the state proclamation is a huge boost for the foundation. 

“We are hoping to have all 50 states recognize IGaN Awareness Day, and having Massachusetts is really important as there are a lot of patients in the state,” Schneider said. “They can be recognized and celebrate IGaN Awareness Day instead of suffering in silence. The disease does not define you, and it’s okay not to be okay.” 

Schneider, a New Jersey resident, created the foundation when her son was diagnosed 21 years ago. She said it’s crucial to the foundation to have ambassadors, like Bartlett, advocating for the foundation.

“It’s really important that these ambassadors come out of their comfort zone and help others in their communities,” she stated, noting that the volunteer ambassadors help patients that are newly diagnosed navigate the disease and teach them what is available. “Victoria is amazing and goes above and  beyond the call of duty,” she said. “We’re lucky and honored to have her as part of the program.” 

Schneider also noted that the foundation is thankful for the kidney donors as well. “We couldn’t do it without our unsung heroes.” 

One of those unsung heroes is Francine Gregoire, Bartlett’s friend and kidney donor. 

The former Massachusetts resident, who now lives in San Carlos, California, has been friends with Bartlett since the two worked together in January 2014. 

Gregoire was moved to become a kidney donor after learning of her friend’s plight. 

“When I received the text from Victoria indicating finding a donor…was pretty much life or death for her, I only had one thought in mind - how can I help her,” she said. “I could not bear the thought of losing my friend.”

After undergoing various tests, and “a pandemic delay,” the friend said she was “thrilled to hear I was qualifying as a donor. I never looked back and would do it again if I had a ‘third/another’ spare kidney.” 

Gregoire stressed how important spreading awareness about the rare kidney disease is for patients, caregivers and for potential kidney donors.

She said spreading the word is critical to the cause. “I had no clue Victoria was affected by IGaN, a deadly kidney disease which still has no cure. It is also key for potential donors to understand that you can live a perfectly normal life with one kidney.”