Living with CLE, a form of lupus: Nandan’s Story

Nandan was on the New York City Subway when he first thought that he might have lupus. The ad in front of him explained the symptoms of lupus – like rashes, fevers, and swelling – which he’d been experiencing his whole life.

Cutaneous lupus erythematosus (CLE), an autoimmune disease that affects millions worldwide¹, occurs when a body’s immune system creates antibodies that attack a person’s skin², harming not only an individual’s physical well-being, but their mental and emotional states as well.

As a teenager growing up in India, Nandan knew something was wrong. His face and body were covered in rashes, and he would feel extreme fatigue all day long. He was constantly misdiagnosed, leading to a 20-year journey of doctor visits before he finally got diagnosed with CLE.

A few years after this discovery, Nandan was diagnosed with cardiac heart failure, one of many health complications caused by his lupus.

“Lupus is like the ultimate party crasher. It comes in, it brings its rowdy friends like rheumatoid arthritis, atopic dermatitis, Sjogren’s, you name it,” Nandan said. “The whole group will come and crash your party. And turn your whole life upside down.”

It took a long time for Nandan to come to terms with his diagnosis. As a teenager, he began wearing a baseball cap to cover the rashes on his face, a habit he still has today after his lupus caused alopecia, a disease that causes a person’s hair to fall out in clumps. As he gets older, he’s begun to feel the impact of lupus in new ways, like brain fog and exhaustion.

“The fatigue is so hard that you feel like you’re wearing a heavy jacket or that someone put a big, heavy blanket on you,” Nandan explained.

However, instead of succumbing to feelings of helplessness, Nandan pulled himself out of isolation and found strength through advocacy and community. He became a dedicated advocate for lupus research and treatment development, adopting the name “Dan The Man” in his advocacy groups for his passion toward finding a cure for lupus.

Today, Nandan continues to collaborate with patients, medical experts, and researchers to broadcast his message, using his experiences to fight for a better future for people living with lupus.

“Yes, I have lupus, I know how to take care of it, but I’m not going to let it control my life,” Nandan said.

Hear Nandan share his story below: