LA CROSSE, Wis. (WXOW) – It’s a disease that an estimated 1.5 million Americans live with, but many people have never even heard of it. Lupus is a chronic, autoimmune disease that can damage any part of the body.
Sometimes called the invisible illness, people living with Lupus don’t really look sick. There is no cure and it can be fatal. The Local Lupus Alliance is hosting a speaker on July 10.
Alfred Kim, MD, PhD. of Washington University in St. Louis will be hosting the presentation entitled “You Don’t Look Sick: Barriers Affecting Patients and their Community of Caregivers/Providers,” a talk targeted to physicians, employers, teachers and families of those affected by chronic illness.
“The disease is highly unpredictable. They may feel well today but tomorrow is a completely different situation that they can’t anticipate. This is purely because of how the disease dynamics work. It has these really rapid flares and remission type of periods and until we have a better understanding of what controls that, a lot of our patients are at the beck and call of their disease,” said Dr. Kim.
Nichole Csete knows all too well what it’s like to be at the beck and call of Lupus.
She tries to channel peace in her backyard garden in Holmen.
She’s planted zucchini, beans, peppers, beets and more. She used straw bales to plant a variety of veggies.
“I had 10 last year I could’ve easily put 30 in here but my husband was like absolutely not,” chuckled Nichole.
Her garden is her sanctuary. It takes her away from the daily hustle and bustle of life, “being a typical mom, working mom of three, I don’t let on that I’m not feeling well.”
“So my friends probably don’t know, and my co-workers probably don’t know, my husband probably usually doesn’t know. Because you look perfectly normal on the outside I think people don’t know to ask or aren’t curious so nobody really talks about it.”
Living with lupus has derailed her life. Diagnosed at just 17 years-old, Nichole had to make some major life changes. “I was working for state parks in Colorado, I had plans to go to college, possibly forestry, I’d been accepted. While I was working outside I developed a rash, extreme fatigue and joint pain.”
“Because one major cause of flaring in lupus is sunlight, working outside for state parks in the mountains was just not in the cards for me.”
Her day job is indoors, but her free time is spent in her garden. Nichole said the Wisconsin sun is a little tamer than in Colorado.
She’s finding solace she once thought was lost. But still worrying about the future, “a big fear too is I don’t want people to think I’m a hypochondriac because I do look okay.”
Her flare ups can be tamed with high dose steroids, even chemotherapy. Nichole needed four rounds of it recently. But she’s not giving up, and she won’t yield to her illness.
She plans to attend Dr. Kim’s speaking event with her family and co-workers. The event will be held from 5:30 to 8 p.m. on July 10th at Celebrations on the River. Pre-registration is required, and a meal will be offered with the presentation. This presentation is free. To register visit LocalLupus.org.