About Lupus

Lupus Stories

Lupus is unpredictable with symptoms coming and going, mimicking other illnesses and sometimes threatening major organs. This unpredictability brings with it a host of emotional, psychosocial and lifestyle issues. Living with Lupus explores these issues through the personal stories of New York City lupus patients.

Amy Thornton, a 37-year-old New Yorker, has been living with lupus since she was 14. Her lupus began with a butterfly rash across the bridge of her nose, and progressed to a variety of other symptoms in her teens and twenties, including joint pain, rashes, night sweats, hair loss and fatigue. In her early thirties, just as she was trying to...

Andre Watson believes in clinical trials, to help himself and to help others also living with lupus. To date, he has participated in five studies and would not hesitate to consider taking part in others in the future.

Bronx native Annette Rodriguez was diagnosed with lupus seven years ago, at age 11. After a difficult, initial bout with the disease, Annette has been free of flare-ups for the past four years. Today, she's a pre-med freshman at New York University, and there's no indication that lupus (or anything else!) will prevent her from reaching her...

Barbara Abrams has lived with lupus for 40 years — her approach is to expect the unexpected and to do the best she can every day.

“Things just happen with lupus, and I’ve learned to accept the uncertainty,” says Barbara. “I have learned many wellness techniques to adapt to my situation.”

Blakely Blackford, 26, moved to New York after graduating from college in 2002 to work in publishing. In 2004, severe and rapid-onset joint pain led her to seek medical help—and to her diagnosis of lupus. A year later she developed lupus nephritis. Here the South Carolina native, who is a photo editor for Bloomberg Markets magazine, shares her thoughts on...

Cynthia Jones has lived with lupus for more than 15 years.  Born and raised in Laurelton, Queens and White Plains, New York, Cynthia is Jamaican-American (her mother was from Jamaica, W.I.) and was diagnosed with systemic lupus erythematosus (SLE) in 1989 at the age of 29.

“I want to contribute to the healing of the world.”

At the Foundation, we know Heide as articulate, dependable, and passionate about fighting lupus.

But perhaps the best word to describe her is resilient.

She’s not only dealt with her own battles with lupus, but lost her 33-year-old...

Jill Nicole Kuirsky first developed symptoms of systemic lupus erythematosus (SLE) in 1988 at the age of 11. But it took another three years of fatigue, joint pain, and headaches for the doctors to correctly diagnose the disease. As with approximately a third of people with SLE, Jill also has Antiphospholipid Syndrome (APS), a blood clotting...

Maggie Gonzales has lived with lupus for most of her 46 years, but wasn't diagnosed until her 20s, after the disease had damaged her liver and kidneys. Today, this New Jersey mother of three struggles with her illness while working to spread awareness of lupus among Hispanics. Three years ago she helped to establish the S.L.E. Lupus Foundation's...

Lupus in men isn’t rare. In fact, there have been several high profile men with lupus: former Major League Baseball outfielder Tim Raines, R&B singer Seal, Hip Hop artist J Dilla, and late CBS broadcaster Charles Kuralt.

This month, we talk to Brooklynite Emmanuel “Manny” Roldan, age 46, to get a local guy’s perspective on...