North Jersey Mom And Son Walk For A Lupus Cure At MetLife Stadium

SOUTH ORANGE, NJ — James Lederman used to get sick twice a year.

"Every winter break and summer break, almost like clockwork, I'd be really sick," he said. "On the couch, 36 hours straight."

In the summer of 2020, while on vacation in Rhode Island, the family thought James had COVID-19. The tests were negative and it took six more months and two biopsies before realizing his kidneys weren't working. On New Year's Eve, they found out it was lupus.

James, now 16, started a chemotherapy treatment right away to help his kidneys. His grandmother had begun chemo that same day, for cancer.

Lupus is a complex disease. It's something the Lederman family is familiar with: James’ mother, Michelle, also has lupus.

"Most people don't know what it is," he said. "She knows what it's like, she knows what it's like to live with it. So it helps."

A doctor first mentioned the autoimmune disease to Michelle in 2007 after she gave birth to her second son, Noah.

“I kind of dismissed it,” said Michelle, who is an executive coach, author and speaker. "In my head, I didn't have any symptoms of it. There was nothing to do. So, I went home."

In 2018, she was seeing several specialists for horrible migraines, arm and shoulder pain, and a face rash. The dermatologist told her the rash was consistent with autoimmune disorders such as lupus.

"It all clicked when she said that," Michelle said.

James and Michelle are getting ready for the annual Walk With Us To Cure Lupus at MetLife Stadium. Last year, they did a virtual walk around their neighborhood. This year, the Ledermans will be there in person.

"James and I want to raise awareness of the disease," she said.

Proceeds from the walk go to the Lupus Research Alliance.

“I am so grateful to the LRA,” Michelle said, adding that she and her family chose to donate money to the LRA because they focus on finding a cure.

LRA President Kenneth M. Farber called Michelle personally when she had questions about lupus research. They talked for an hour, and Farber gave Michelle treatment advice and a good rheumatologist to consult.

"I was blown away, and so grateful," she said. "I feel like I have been educated and connected."

It can take years to diagnose lupus, Farber said.

“Lupus is one of the most complex autoimmune diseases, affecting millions worldwide in millions of ways,” he said in a statement. “That makes it extremely challenging to diagnose, treat, and research.”

The unpredictability of the disease makes it hard to know what each new day will bring.

"I don't know if I'll have a good day or a bad day," Michelle said.

During COVID-19, James took online classes, sometimes from his hospital bed. Now, he's back in person at Columbia High School, where he is a sophomore.

“I’m tired a lot, because it's general high school tiredness multiplied by lupus lethargy,” he said. "I tend to just brace and go through it, and just get through the day."

There is no cure for lupus, but the symptoms can be treated. James is in a maintenance phase, where he takes several medications every day and deals with his symptoms daily, as his mom does.

"When you have lupus, you can't forget about it," Michelle said. "Every little symptom could be a sign of something bigger."

James has major organ damage, while Michelle does not.

"The kidney damage isn't reversible, but it is livable," Michelle said.

Michelle said it's difficult as James' mom to see him ill. She said she feels some guilt about it.

"Even if I didn't have lupus, it's the idea that your kid's sick. He has to deal with all this s---. It sucks."

For people like Michelle and James, the LRA is working on new treatments and ultimately "find a cure through the power of precision medicine."

“The $220M the Lupus Research Alliance has invested since 1999 have laid the groundwork for all the lupus drugs approved in the past 11 years (which are all the drugs approved in the past nearly 70 years!)," Farber said. "The next frontier that the LRA is trailblazing is unraveling the complexity of lupus to be able to develop personalized treatments to tackle lupus on the individual level.”