While pregnant with her second child, Shamiere Schwahn noticed something was off.
She experienced issues with her hands and arms, along with hip pain that was so bad, Schwahn said that she “sometimes … couldn't even stand up and walk to the bathroom.” She also noticed heartburn, along with “weird feelings in (her) chest.”
The symptoms she experienced, Schwahn said, were assumed to be because of her pregnancy. It wasn’t until after her daughter’s birth in February 2001 that things became clearer.
“When she came out, her father jokingly said (that) she (looked) like baby Yoda, from ‘Star Wars,’” said Schwahn. “You know how Yoda's eyes are kind of big? Her eyes were swollen like that.”
Schwahn’s daughter’s eyes were so swollen that they would “constantly flip over” with any “yawn, cry, or stretch.” She also had an irregular heart rhythm and the front of her face was noticeably lighter than the rest of her body.
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Schwahn took her daughter to a pediatric cardiologist to look into the irregular heart rhythm, but the lighter part of her daughter’s face wasn’t something that she was concerned about.
“As a Black child, when you're born, your pigmentation isn't really prominent. And so as you age, you get darker and darker,” said Schwahn.
But the lighter part of her daughter’s face never darkened to match her overall skin tone – instead, it started looking redder and inflamed, which led Schwahn to take her daughter to a pediatric dermatologist.
Shamiere Schwahn The dermatologist determined that what Schwahn’s daughter had was neonatal lupus. One of the tests used to determine neonatal lupus involved looking at Schwahn and her daughter’s blood – which revealed a high level of antibodies. Neonatal lupus, according to the Centers for Disease Control, occurs as a result of the mother’s antibodies affecting the child in utero. The involvement of these antibodies had affected the skin cells on Schwahn’s daughter’s face, along with her heart.
Schwahn said she was told her daughter would be alright, with time, since “as (children) age, they shed (their mother’s antibodies) and then start to develop their own.”
The dermatologist, however, also gave Schwahn a referral. Because her daughter had been born with neonatal lupus, the dermatologist suspected that Schwahn herself had lupus.
The cruel mystery
Lupus, said Joy Buie, Ph.D., MSCR, RN, vice president of research at the Lupus Foundation of America, is a “heterogeneous disease, meaning that it can show up in many different forms and no two presentations are the same.” Some commonly occurring symptoms, however, include fatigue and pain in the joints. The Lupus Foundation of America’s website also lists swelling, headaches, low fevers, light sensitivity and chest pain as possible symptoms, along with a “butterfly shaped rash on the cheeks and nose.”
The root cause of lupus, said Buie, is an immune system that has trouble telling the difference between its own cells and foreign cells, like viruses and bacteria. As a result, the body’s immune system attacks its own cells as if they were foreign bodies. The causes of lupus are not known, but lupus can run in families. According to the Lupus Foundation, medical experts also think it may develop in response to certain hormones like estrogen or environmental triggers.
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Lupus is difficult to diagnose, according to Buie, because it has no “solidified diagnostic criteria,” but requires a medical practitioner to “look at the whole picture” through physical exams and blood tests. Data indicates that it can take up to six and a half years to get a lupus diagnosis after having consulted with three to four different medical providers.
Lupus also currently has no cure, meaning that treating the disease is about managing symptoms . But along with managing symptoms comes managing the logistics of living with the disease – logistics that impact every sphere of a person’s life.
“We call (lupus) the cruel mystery,” said Buie, “because it is not only cruel to the body, but its ramifications socially, financially, (and) emotionally, can be very cruel and disheartening.”
The logistics of lupus
After finding out from the pediatric dermatologist that there was a chance she may have lupus, Schwahn didn’t look into it for a while.
“He did tell me a diagnosis like that could make things difficult for insurability purposes,” said Schwahn. “I wanted to get some life insurance and when you do certain things, you're subject to medical underwriting. So I didn't want any kind of record to say I had some kind of problem. So I kind of held off for a little bit.”
But pain continued to impact Schwahn’s life. At work – Schwahn worked as an analyst at Best Buy at the time – pain in her hands and wrists made it hard to use a computer. At home, as a mother of a newborn and an older child in preschool, pain made caring for her kids difficult. As Schwahn wrote in a 2005 article for the Lupus Foundation of Minnesota, “it was painful for me to pick either of them up, change a diaper, or even hold my infant for more than two minutes to nurse.”
The symptoms eventually led Schwahn to a rheumatologist in 2002, who confirmed what had been suspected – that Schwahn was living with lupus. What happened next was a barrage of different treatments for the symptoms – including Prednisone, a steroid to reduce inflammation that also made her unable to sleep.
“I'm a go go go person naturally,” said Schwahn, “I'm always active doing things – imagine that on steroids.”
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Another drug Schwahn took called Imuran resulted in side effects of bone marrow toxicity and kidney issues, which led to hospital time away from her children, an experience Schwahn described succinctly as “horrible.”
Years after her diagnosis, Schwahn has found out another drug may be producing negative side effects in her body. Plaquenil, also known as hydroxychloroquine, – the same drug falsely touted by former president Donald Trump as a potential treatment for COVID-19 – may have permanently damaged her vision.
“I've been on Plaquenil for a long time, and one of the known side effects is changes to the retina, vision changes, et cetera, but they're irreversible. Even once I stop there could be continued damage,” said Schwahn. At the time of the interview, she was scheduled to see her rheumatologist the next day.
According to the Lupus Foundation of America, lupus is three times more likely for Black/African American and Native Americans and Alaskan Natives than white people. For Hispanic patients, the likelihood of lupus is two times higher. The data also indicates that the prognosis of lupus is worse for non-white people. For example, lupus nephritis, where kidneys are damaged, along with cardiovascular disease, are higher in all non-white populations, and are “amongst the top leading causes of death in minority groups living with lupus.”
For Buie, these disparities can be explained through looking at the social determinants of a person’s health – the conditions in their environment and the ways that they live which affect their wellbeing.
“What we know based on the literature is that people who tend to be from racial or ethnic minoritized communities tend to have poor access to things that sustain a high quality of life,” said Buie. “Oftentimes these populations live in food deserts that expose them to ultra processed foods. They oftentimes don't have access to fresh foods that are conducive to promoting health. We also know that living in economic instability (and) not having a high quality education, which has been associated with low health literacy, can also lead to more exposure to things in the environment that can be detrimental to health. Negative environmental influences (and) negative social influences that cause psychosocial (and) physiological stress in the body, and make someone much more susceptible to developing lupus.”
Managing the disease has led people into poverty.
“Financial assistance is the biggest need of the lupus community,” said Buie, noting that treatment can be incredibly expensive. For those with general systemic lupus erythematosus (SLE), the most common form of lupus, yearly direct costs are estimated at $33,000. For those with lupus nephritis – where the kidneys are impacted – yearly direct costs are estimated at $71,000.
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“People won't go to the doctor because they can't afford it and they'll end up in the emergency room or won't get their medications because they have to pay the light bill or they have to make sure their children are fed,” said Buie. “It is incredible how much this disease can impact somebody's life and livelihood.”
Schwahn has not personally suffered financial instability as a result of her treatment for lupus, but can easily see how others may be driven to poverty by the disease.
“For someone that's living paycheck to paycheck, especially if they have kids and they are the sole provider – I could see how (treatment) could be really costly,” said Schwahn. “And you hear the stories about insurance coverage. Part of the reason why I've always worked for larger entities is because I needed to stay within a large employer pool where I was not individually rated for insurance. If I insured myself on my own, that could be subject to medical underwriting and my rates might be reflected based on whatever my health history is, which could be problematic.”
Lupus, which primarily affects women aged 15 to 44 , can also have negative impacts on social relationships, including with intimate partners.
“We're talking about young women of childbearing age, some of them married, some of them not,” said Buie. “I can't tell you the countless stories I've heard from women who say, ‘Oh, yeah, I was married before I got the diagnosis, but then my husband left me.’ A lot of people suffer socially, physically, (and) financially because of lupus.”
Schwahn, who divorced her former husband in 2010, doesn’t blame lupus for her divorce, but does think that it may have added to the pressure she felt in the relationship.
“I felt like a single married woman,” said Schwahn. “I'm doing everything that a single woman would, but I'm married and I have a husband that comes home every night and gets to enjoy his family when he's ready to enjoy them. I think with lupus, it added maybe more stress.”
After her appointment a few days ago with her rheumatologist, Schwahn was contacted by MinnPost for a follow-up to ask how she was doing. She noted that she’s discontinued taking Plaquenil after speaking with her rheumatologist. She’ll also have to stop taking Celebrex before a scheduled ankle replacement surgery.
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Living and living well
Buie and other personnel at the Lupus Foundation of America are focused on improving outcomes for people with lupus. A program called “Improving Minority Participation and Awareness in Clinical Trials,” which is abbreviated to IMPACT+, focuses on recruiting people from communities of color to participate in clinical trials for lupus treatments. In its current iteration, said Buie, the program is focused on reaching out to the Black community .
“If we don't have diversity in clinical trials, then we'll continue to see these failures where, in mice the drugs worked, but in humans, you know, once you get into a phase one or phase two, there's a lot of failure because the right people aren't enrolling in the trials for that particular drug,” said Buie. Mycophenolate mofetil, Buie explained, sold under the brand name CellCept, has been shown to work better to treat African Americans with lupus nephritis than white people, while cyclophosphamide has been less effective for African Americans.
There is also the project “Be Fierce, Take Control,” which receives funding from the Centers for Disease Control. This project web page provides information on lupus with the aim of reaching out to Black and Hispanic women . It also contains a questionnaire that determines if the person filling it out may be at greater risk of developing the disease.
For Schwahn, though the logistics of dealing with lupus do take up time, her determination and attitude are such that she lives her life to the fullest.
“I've done softball, kickball, flag football and I've been curling for the last 10 years,” said Schwahn. “I hurt all the time, but I still do it because that's what I love.”
She also said the support she received from women she connected with through groups online with the Lupus Foundation of Minnesota and laughed, remembering how that version of the internet, with its message boards, seems so “archaic” now.
“I've had more years with lupus now than I've had without it,” said Schwahn. “So I'm at that point in life (where) you are grateful for what you have. Even though there's stuff that happens in life, you know, it could always be worse. It could surely be better. But it could definitely be worse.”
This article first appeared on MinnPost and is republished here under a Creative Commons license.
