February 19, 2014
By: Katie Egan
In 1997, Jessica Kirshenbaum was a senior at the University of Michigan, but she didn’t look like everyone else. And she didn’t feel like everyone else either. Butterfly-shaped sores plagued her face. Her body constantly felt tired, too tired to move. And then she started slurring her words.
“I felt like I was drunk,” the then 21-year-old said. “Or like I had dementia.”
This wasn’t normal for Kirshenbaum, now 38 and living in Naples.
But the strange symptoms came and went so she chalked them up to stress, a 28-credit-hour-semester and a bad breakup.
Those sores still haunt her 10 years later and most days she still feels too tired to get out of bed. But after countless doctor visits and three diagnoses, Kirshenbaum finally learned that she had lupus.
“It was nice to finally know what it was, but that excitement was short-lived,” Kirshenbaum said.
There are five kinds of lupus, according to the U.S. Department of Health and Human Services. Kirshenbaum has systemic lupus erythematosus (SLE), the kind she says is the worst.
“It’s a lonely disease,” Kirshenbaum says. “No one feels what you feel.”
She has to plan her life around visits to one of her eight doctors: a nephrologist for her kidneys; pulmonologist for her lungs; rheumatologist for her arthritis; an ophthalmologist who specializes in the retina — since her medication can damage the light sensitive part of the eye; a gastroenterologist for her liver; a neurologist and an internist — similar to a general care practitioner.
But above all, Kirshenbaum refuses to become its captive.
“Although Jessica has gone through the wringer with lupus, she always stays positive,” said Janet Yuen, director of special events for the Lupus Foundation of America’s Florida chapter, and a friend of Kirshenbaum.
Kirshenbaum says a great support group makes all the difference.
“Sometimes my friends take care of my dog. They bring me groceries,” Kirshenbaum said. “They listen and they’re still there even though I don’t show up for everything.”
SLE is an autoimmune disorder and 100,000 people in Florida have it, according to Amy Yalden, the president and CEO of the Lupus Foundation of America’s Florida chapter.
The immune system turns against parts of the body it is designed to protect. A weakened immune system leads to inflammation and damage to body tissues.
SLE is not an isolated disease. It can affect the joints, skin, kidneys, heart, lungs, blood vessels and the brain. Some of the most common symptoms include painful, swollen joints and arthritis, extreme fatigue, skin rashes, unexplained fever and kidney problems.
Unfortunately there is no cure and only one drug to treat the disease has come out in the last 59 years.
“The disease is consistently inconsistent,” Kirshenbaum says, because she never knows when a flare might happen.
It was tough at first. “I had to get a reality check,” Kirshenbaum says. “I couldn’t go 100 miles-per-hour anymore.”
She spent three to four years feeling very inadequate, but today you would never know it because Kirshenbaum doesn’t let the disease define her.
“One look at Jessica’s smile and she literally will light up the whole room and is always the life of the party, yet what most don’t see is the hospital stays, the medication it takes to keep her body from attacking itself or the pain she endures on a daily basis,” said Yalden, another friend of Kirshenbaum. “Jessica is a wonderful example of someone who doesn’t let her disease define her, but instead uses it as a platform to change the future for others who are living with lupus today or will be diagnosed.”
Kirshenbaum approached Yuen to become involved with their annual fundraiser, The Walk to End Lupus Now, without hesitation.
“Jessica started Team Kirsh (for the walk) and recruited all of her friends and many supported her by registering to walk or by donating very generously. She is one of our top fundraisers and one of our most outspoken advocates,” Yuen said.
The Walk to End Lupus Now events are conducted nationwide by the Lupus Foundation of America (LFA) to raise money for lupus research, increase awareness for lupus and rally public support for those like Kirshenbaum who suffer from its brutal impact.
Kirshenbaum says three things help her get through the day: hope, faith and grace.
“I have faith that one day there will be a cure,” Kirshenbaum said.
Maybe the community can help make her wish come true.