It's far from a sunny Sunday afternoon but Meies Matz is wearing sunglasses. Hours-old rain still covers most of the chairs and tables outside and the clouds suggest more is on the way. Still, Matz can't take her shades off. She suffers from lupus, and any kind of UV light can trigger a flare, which can cause sores, migraines, fatigue, joint pain or worse.
On Jun. 2, she participated in the "Walk to End Lupus Now" to raise money for the Lupus Foundation of America, or LFA. The Northwest chapter of the group put on the walk to support research and outreach. Matz says this is particularly important because lupus disproportionately affects women of color and is often misdiagnosed in Black women in particular, due in part to unconscious biases, but also because its symptoms vary and mimic other illnesses.
"There needs to be awareness in the African American community that 75 percent of women who get lupus are women of color," she says. "We need to know what this looks like and how we can turn the tide and use our voices to have an impact on health inequities."
Lupus is a chronic, inflammatory autoimmune disorder affecting the connective tissue, where the body's own immune system attacks healthy cells and tissues, causing inflammation and malfunction of various organ systems. In lupus, the organ systems most often involved include the skin, kidneys, blood and joints. In some cases, lupus may be a mild disorder affecting only a few organ systems. In other cases, it may result in serious complications and death.
According to the U.S. Department of Health, Black women are three times more likely to get lupus than White women. Black and Latino women are also more likely to get lupus at a younger age and suffer from more severe symptoms like kidney problems. In particular, Black women with lupus have more problems with seizures, strokes and dangerous swelling of the heart muscle. Overall, nine out of ten adults diagnosed with lupus are women aged 15-45.
Matz experienced symptoms of lupus, including a mild stroke, for at least 20 years before being officially diagnosed in 2012.
She says she had a lot of fevers as a child, which she later found out was an early sign of the disease. When she was 13 or 14, she had kidney issues, which required special medicine.
From 1991-95, her and her husband had three children, each pregnancy was high risk, and finally after her third she was advised to not have more. Although high-risk pregnancies and miscarriages are also considered early signs of lupus, no one made the connection during this time either.
About a year after the birth of her daughter in 1995, Matz suffered a mild stroke. Her mouth was the only part of her body that she could move. Doctors ran a number of tests and said her condition was lupus-like, but began rigorous treatment for her symptoms.
Matz was in college in California at the time and had to put her education on hold as she went through physical therapy and learned to walk again. The family didn't have a lot of money and chose to move to Oregon in 2001 because it was cheaper to live and that's where her husband's family was located.
The first year in Oregon was really difficult, she said. She switched to BlueCross BlueShield and found her insurance to be expensive and ineffective. Eventually, she had to choose between paying for her lupus medication and medicine to treat her children's asthma. Matz chose to take care of her children and her condition worsened.
After her husband got hired by the state in 2003, she switched to Kaiser and at first she did not connect with doctors. Coordinating care was too hard to do while also raising her children and working so she chose not to see a rheumatologist.
In 2010, she had a bad flare and had to have emergency surgery. Matz was so anemic that she met the criteria for a blood transfusion. While this surgery normally takes two hours, doctors found a tumor attached to her uterus so it took five. After the surgery, doctors told Matz they were surprised she was even standing.
Following the surgery, she was again referred to a rheumatologist to manage her lupus, but she felt invisible and unheard.
"Doctors aren't always as sensitive as they could be or should be," says Matz. "I think there are cultural nuances that they aren't aware of. I think that if you're young and brown, it makes it harder."
This rheumatologist put her on Plaquenil. 30 days into the new medication, she began getting bad headaches, dizziness and spikes in her blood pressure. During one episode, her primary doctor had her taken to the hospital by ambulance. Her regular rheumatologist was out that day and a stand-in said that this was an issue previously seen in Plaquenil and requested Matz get off of the drug.
Her regular rheumatologist disagreed.
One of the contributing issues, according to Matz, is that that United States doesn't have a standard of care for lupus like the international community. There also isn't coordination of care, which means lupus patients have to coordinate and manage all of their different doctors and medicines on their own.
Ultimately, Matz didn't go back to Plaquenil, but was put on prednisone. However, she was still experiencing problems like vision changes, ulcers and rapid weight loss coupled by an inability to get hungry so the rheumatologist suggested Imuran.
Matz didn't take the Imuran and when she went to get blood work done, her white blood cell count was low. The rheumatologist thought that it was because of the medication but Matz didn't tell her she wasn't taking it.
"I didn't tell her I wasn't taking the Imuran because I didn't like her and I didn't trust her, which is not good," she says. "African American women are really (skeptical) and for good reason. We have Tuskegee. We have Henrietta Lacks. We have a long history of the medical system abusing people of color. It doesn't excuse it, but it makes it understandable."
Her worsening symptoms and need to find a trusted primary doctor and allergist/immunologist in Kaiser was what inspired Matz to begin reading the LFA website and start a support group. She read through message boards, did her own research on lupus through resources on the site, and finally made the decision to switch rheumatologists.
LFA has partnered with the American College of Rheumatology, the US Department of Health and Human Services, and other organizations to create curriculum called the Lupus Initiative - Eliminating Lupus Health Disparities. According to the LFA, it is designed to improve the diagnosis, treatment, and management of lupus in patient populations disproportionately affected based on race, ethnicity, and gender through the education of medical professionals in training and in practice. One of the hopes of the Lupus Initiative is that addressing the health inequities of lupus will help to address other health inequities that are endemic to the poor and people of color.
Before Matz began working with her new rheumatologist, she had an honest conversation about her last experience. She says she was on board when the new doctor suggested trying Imuran again because this doctor listened to her fears as well as feedback from other doctors.
Matz has been taking Imuran every day since and has had blood work done consistently. While she hasn't had too much nausea she says the fatigue has been pretty intense. The medications have improved her ability to eat, walk and feel more human again, she says.
Matz hopes it continues to work but understands there are side effects to chemotherapy. Being in the presence of people who are sick or who have just taken live vaccines can be very dangerous for her. When her daughter had H1N1, Matz was sick for an extended period of time and lost ten pounds in one week. She notes that it's not usually the lupus, but infection or kidney or heart failure that kills people.
"If someone gets me sick I could die from that," says Matz. "I could do everything right, and still not live."
She also notes that lupus isn't an inexpensive disease. It's estimated to cost $20,000 a year, she says. In addition to that, Matz says most patients will go through four to eight doctors before they are even diagnosed.
Not everyone has the luxury to afford all of the medications and various therapies that lupus can entail and that's why Matz says she and others are walking Sunday.
"Just by having lupus you have a higher risk for cardiovascular disease," she says. "You have a higher risk of having hypertension. You have a higher risk for having kidney failure. Life becomes precarious and more precious all at once and we need allies to not only hold our hands, but to fight for a cure."
To see more photos from the "Walk to End Lupus Now," go to the Skanner News Facebook page.