Barbara La Rue wants to get the word out that lupus is a disease affecting 3 million people.
If untreated, it may be deadly.
Thousands die from it each year.
Its cause is unknown.
May is Lupus Awareness Month, and Friday, May 18 is “Put on Purple Day for Lupus.”
People are encouraged to wear purple that day to support those who have it, she said.
La Rue, of Waupaca, was diagnosed with the disease in 1984.
Lupus is an autoimmune disease in which the body makes antibodies that react to the person’s tissue.
It attacks part of the body, such as organs, bones, muscles, joints and skin.
The disease is more prevalent than leukemia, muscular dystrophy, cerebral palsy and multiple sclerosis, with many of its symptoms mimicing other illnesses.
Symptoms of lupus are organ involvements, rashes, fatigue, seizures, fever, chest pain, muscle and joint pain, hair loss or appetite and sun sensitivity.
“Everything was hurting,” La Rue said in describing how she was feeling at the time of her diagnosis.
In addition to that “flare” in 1984, she also had one in 1992.
The 1992 flare attacked her pancreas, liver and kidneys.
Most lupus patients see a rheumatalogist for treatment, and La Rue is among those who does that.
Earlier this year, UW Health started Wisconsin’s only clinic dedicated exclusively to treating lupus patients.
It runs every other Monday morning, with plans to expand it as needed.
Comprehensive integrated care is being offered there.
Appointments include meetings with rheumatologists who are lupus specialists; social workers instrumental in getting social, emotional and psychological support to patients and families; and pharmacists to discuss medication plans.
People may reach the clinic at 608-287-2800.
La Rue said those with the disease need a good support system that includes family and friends.
“You don’t look sick” is what she often hears.
La Rue’s mantra is, “Lipstick fools everybody.”
She said listening to ones body is her No. 1 piece of advice to those who have lupus.
Finding a good rheumatalogist is also important.
“Support systems make a difference,” La Rue said. “People should not be afraid to ask for help when they have a flare.”
Locally, a Lupus Support Group meets on the first Monday of the month at Ascension St. Elizabeth Hospital, in Appleton.
People may call 1-800-333-1380 for information.
Another way to offer support is by participating in the annual Walk to End Lupus Now.
This year’s walk will begin at 8 a.m. Saturday, Sept. 22, at Fireman’s Park, 7400 Lee St., in Middleton.
Those with questions about lupus may also contact La Rue at [email protected] or 715-281-0045.