Karen Duffy was a red carpet mainstay as an MTV VJ, model and actress in the 1990s, but disappeared from the spotlight just as her star was rising.
Now, Duffy — once known as Duff to MTV viewers — has shared that she was diagnosed in 1996 with sarcoidosis, an incurable illness that comes with excruciating chronic pain.
The former video jockey, now 60, recently recounted the last night she remembered living without chronic pain: when she attended the 1995 Emmys with her pal George Clooney.
“That was the last day that I lived without chronic pain,” she told People.
“It was the next day that I became symptomatic with sarcoidosis. That photo marks the end of my healthy life with one of the most charming and hilarious gentlemen. Talk about going out with a bang!”
The morning after the A-list event, Duffy woke up with head and neck pain that she described as “an electric eel swimming up my spinal column.” Doctors soon discovered an inoperable “mostaccioli-size” lesion putting pressure on her brain stem and spinal cord that had already damaged her nerves and was causing the intense pain.
After nine months of doctors visits and physical agony, Duffy was diagnosed with sarcoidosis, which affects some 200,000 people in the US.
“It’s constant. It’s like having somebody shouting in your ear,” she described to ABC News — something she also talks about in her new book, “Wise Up: Irreverent Enlightenment From a Mother Who’s Been Through It,” a collection of letters written to her son. But despite the debilitating pain, Duffy maintains an optimistic attitude: “I can’t control what happens. I can only control my response.”
The author manages the pain with a treatment program of steroids, chemotherapy, morphine and a pain patch. She has lost partial mobility, has numbness in her hands and her feet and is sometimes unable to leave the house due to the pain.
Duffy is undeterred as she continues to work in Hollywood behind the scenes, having recently produced the Bill Murray documentary “New Worlds” and the upcoming “Greatest Beer Run Ever” starring Zac Efron — all the while raising her 18-year-old son, Jack Lambros.
“I’m inspired to do as much as I can with what I have,” she told People. “I’ve already had the scariest thing that pretty much can happen, happen. I know there is trouble ahead. I don’t know what kind of trouble, but I’m not afraid because I’m grateful for my life.”
The former broadcaster celebrated her 60th birthday last May, honoring a milestone made extra special due to her illness. “I just can’t believe I got here. There were times I didn’t think I’d make it. I feel like this is all a bonus round,” she said.
“My body may be breaking down, but my spirit is ginning up. I wanted to express gratitude for my life.”