“The Voices of Lupus”

Great article on the New York Times website!!

The Voices of Lupus
By Tara Parker-Pope

Credits: Jennifer S. Altman, Ann Johansson, Steve Kagan, Maggie Steber and Alex di Suvero for The New York Times

June 9, 2009

The death of superstar Michael Jackson has cast the spotlight on a little known autoimmune disease called lupus. In an interview on MSNBC’s Countdown with Keith Olbermann, the wellness guru Dr. Deepak Chopra, a longtime friend of Michael Jackson, disclosed that the singer suffered from lupus.

Lupus affects more women than men, and is more common among blacks and Asians. The inflammation associated with lupus affects everyone differently, attacking skin, joints, kidneys, the heart and lungs. Symptoms, which often flare and subside, can be vague, mysterious and frightening and show up in a variety of forms in different patients. They include, fever, fatigue, joint pain, anxiety and mental confusion. Others symptoms include a butterfly-shaped rash on the face, skin lesions, mouth sores and hair loss.

This week, in our regular Patient Voices series, Web producer Karen Barrow focuses on six people who suffer from lupus.

“The hardest thing about lupus is that it’s an invisible disease,” says Carolyn Sayre, 24, of Manhattan. “It doesn’t necessarily confine you to a wheelchair or make you walk with a cane, but it makes you tired and achy and swollen and sort of makes you feel like every day you’re waking up with a bad case of the flu.”

Wendy Rodgers, 36, of Torrence, Calif., said many people don’t understand lupus. She said her marriage ended because of the difficulties of coping with the disease.

“Lupus is often called the look-good, feel-bad illness,” she says. “It’s an illness that is very deceptive. A lot of times you don’t look bad, you don’t look sick. You often don’t act sick….The marriage didn’t work out, but I’ve had a lot of family support….You need at least one person, someone you trust…to be there for you when you cannot speak for yourself.”

Please visit their website for more on this story: The New York Times