May is Lupus Awareness Month. The autoimmune disease means the body’s immune system attacks its own healthy organs and tissues. Symptoms of lupus can include fatigue, joint pain, skin rashes, chest pain, dry eyes, headaches and memory loss.
Elizabeth Kosmach is an elementary teacher in Milwaukee who was diagnosed with lupus when she was in college. She was experiencing chronic fatigue and other seemingly random symptoms, which promoted a visit to the doctor. She got the call that she had been diagnosed while she was at work.
“The fear, the fright cause I was reading [my diagnoses] and I was so scared. I remember going into a closet, calling my mom and I started crying,” Kosmach recalls.
There is no cure for lupus yet and doctors don’t know exactly what causes the disease to take hold in a person’s body.
Dr. Mary Cronin, who specializes in Rheumatology for Ascension Health, says that Lupus first started being diagnosed in the 1950s. She says that in early days of diagnosing the disease, it was often thought to be fatal because there was little research into how to treat it. Even as technology has progressed, Cronin says it can still be difficult to diagnose patients.
“One of the more common [tests] is called an antinuclear antibody or ANA, and it can be positive in people who don’t have lupus. So, even though we think that it’s specific for lupus, it’s not necessarily so — so that’s where some of the subtleties of diagnosing people can be,” she says.
There are treatments but they aren’t always effective. Kosmach was initially given an anti-malaria drug, which has proven to help people with lupus, but it made her legs weak and she would often fall. She has tried to avoid steroid based and IV treatments with worries about the long-term effects.
Cronin says a problem with lupus treatments is that all have potential side effects. “It’s a balancing act in keeping people healthy with these medicines but also trying to prevent the side effects. So, it would be wonderful to come up with a medicine that didn’t have all these side effects that really did keep people in remission,” she notes.
Part of Lupus Awareness Month is the focus on research. Cronin says pinpointing specific genes that cause lupus or creating better medicine would be key in the fight against the disease.
“We need better medicine, more targeted medicines, safer medicines and we need to be able to stratify patients better, probably based on their genetic makeup,” she says.
Currently, Kosmach takes a mix of pills she says work to suppress her immune system and to help her joint pain, which she says is particularly bad.
“They say I have nerve damage from my lupus, so my arms are like a 60-year-old and I’m 31,” she says.
Kosmach says she is often frustrated with the fact that she is constantly forced to plan parts of her life around her lupus. “You have to strategically plan your week, your day, your weekend to have enough energy to do everything, and it’s really hard having an illness that people can’t see,” she explains.
Working with kids, Kosmach says she has honest conversations about her lupus. Often kids will say things like, “You look a little rough today Ms. K," and she uses those moments to teach her kids not to point things like that out because they don’t know what a person is going through.
She says kids also ask if her lupus is going to kill her. Her usual response is, “There’s no cure, yet,” but the fear that her disease could take her life lingers in the back of her mind.
While the disease does take up a major portion of her life, Kosmach says she tries to make sure that living with lupus doesn’t define her entire life and she reminds herself that people with lupus can still do great things.
"It's an internal battle to make sure you can accomplish things but also know your limit," she admits. "[But] lupus doesn’t define me. It is a part of my life, it’s a big part of my life but I define me, my family defines me and my actions define me."
