The Battle Within
On the outside, lupus patients may appear fine, but on the inside, they are in pain.
Antionette James (left) and Bernadette McClair
By DeJanay Booth
Identical twins Bernadette McClair and Antoinette James share a love for their faith and family.
They, along with James’ adult daughter, also share an autoimmune disease called lupus.
In 2009, James fell ill. A visit to her primary doctor began a chain of life-changing events.
“You have a rare cancer: multiple myeloma,” he told her. “(You have) six months to live.”
She was in disbelief.
James, of Oak Park, went to the Breslin Cancer Center in Lansing for tests. When her conditions worsened in January 2012, she was moved to the Karmanos Cancer Center in Detroit. Instead of multiple myeloma, doctors diagnosed her with amyloidosis — an abnormal protein that builds up in tissues and organs and can lead to life-threatening organ failure. She needed to go to the Mayo Clinic in Minnesota.
Medicaid and health insurance did not cover her visit, so her twin started a nonprofit called MI Sister’s Keeper.
The Ypsilanti resident raised between $2,000-$4,000 within a month for James’ meals, housing, and one of her medical bills. A charity supported by the clinic raised the remaining $36,000.
At the clinic, James received yet another diagnosis: systemic lupus erythematosus or SLE. It is the most common form of lupus and affects the organs and nervous system. She says she has a lot of issues with nerve pain in her feet and hands.
Then McClair began to suffer symptoms of her own and experienced bronchitis in 2014.
After two weeks of taking antibiotics, she noticed sunburn-like patches on her arms and legs. It cleared up, but left her skin feeling tight.
McClair underwent a biopsy, and was diagnosed with the skin disease scleroderma. But after three more biopsies, McClair found out that she, too, had a form of lupus (lupus panniculitis) — one that affected her skin.
“Things are still changing and happening,” McClair says. In April, she found out that she had a lesion on her brain and is on a long waiting list to see a brain surgeon.
The Invisible Imitator
Lupus is sometimes called “the great imitator;” its symptoms are often like those of other diseases, and — according to the Lupus Research Institute — doctors find it difficult to diagnose.
It takes more than one lab test to define it. Symptoms that characterize lupus imitate other conditions such as infections. It comes and goes and can take months for a conclusion.
Before McClair and James learned of their true diagnosis, they underwent biopsies, lab work, hospital visits, X-rays, and a CT scan.
Lupus can affect any part of the body, creating pain in the joints, on the skin, and inside the body, according to the Lupus Foundation of America. Women experience the disease more than men and at the ages between 15 and 44.
The disease occurs when the immune system attacks healthy tissue in the body. Lupus is likely caused by a combination of genetics and environment, and people with an inherited predisposition may develop it when they encounter a trigger in their environment. Potential triggers may include sunlight, infections, and certain types of drugs, such as anti-seizure or blood pressure medications and antibiotics. But in most cases the cause is unknown.
Common symptoms include fever, swollen joints, fatigue, headaches, and rashes characterized by their butterfly shape.
In the United States, more than 1.5 million live with lupus; in Michigan, nearly 45,000 have the disease.
Aside from being difficult to diagnose, lupus is an “invisible disease.” Patients can seemingly look healthy yet be in severe pain.
Lupus “does not have a face,” says Christina Hayes, James’ daughter who also has a form of lupus. Twenty percent of people with lupus have a sibling or parent who also has the disease.
Before James and McClair knew of their condition, James’ daughter Hayes experienced fatigue at age 19, nearly 10 years ago. Then a sophomore at Eastern Michigan University, she started missing classes and falling behind on her work.
Hayes figured that something was wrong when carrying groceries into her apartment became impossible. She learned that she had mixed-connective tissue disease, which shows symptoms of a combination of disorders — primarily lupus, scleroderma, and poliomyelitis. Approximately 10 percent of people with lupus have mixed-connective tissue disease.
Hayes withdrew from school and her condition deteriorated. She took a trip to Georgia to get her mind off the disease, ignoring doctors. James tried to reason with Hayes to stay, but she made up her mind.
“Mama, your prayer will reach me in Atlanta,” Hayes said before taking off.
A month after, the next call James received about her daughter was from a hospital telling her that Hayes was in intensive care. James flew to Atlanta, and they returned home a week later. Hayes was at the University of Michigan hospital for 30 days.
Surviving on a feeding tube, things turned for the worse when Hayes’ blood pressure exploded to a dangerous level, causing a seizure that resulted in memory loss.
But the damage was not permanent. Hayes regained her memory and now has a year-old daughter and is taking classes to become a bartender, despite her arthritis. She has difficulty opening bottles or putting on deodorant.
To her family, she’s an inspiration.
“That’s why (Hayes) is my hero,” McClair says. “It’s like a sisterhood.”
During an interview, James grabs her foot and massages the bottom of it. She slightly moans as she attempts to relieve the pain. She describes it as a hot and cold tingly feeling as if it were asleep.
“(I’ve always said) if you can’t run, walk. If you can’t walk, crawl,” she says. “If you can’t crawl, I’ve learned to just roll.”
A study done by the Lupus Foundation of America says 78 percent of people with the disease easily cope with it.
But when it comes to managing lupus, it means living with it until death. It is not curable, but it is not contagious. Besides prescribed medication, people use other forms of healing treatments including massage therapy, herbs, and supplements.
McClair takes about 10 pain medications daily. Unfortunately, it causes extreme fatigue, making her job as a transcript evaluation specialist at Washtenaw Community College challenging. But it motivated her to keep trying.
James decided to use a different form of medicine. A full-time student who spends her free time raising her two grandsons, she researched and found GreenLite Clinic. She was certified for medical marijuana.
With the help of Dr. Kumar Singh, she began her “pain management.” James says she felt a difference within the first 30 minutes. Other than a vaporizer, she does not use any other forms of medicine.
Together the three women formed a bond and share their daily struggles with lupus. They also try to raise awareness and serve as advocates. McClair and James conduct annual benefit walks for research for lupus, held in May, and they hope to plan a purple night where attendees wear “Put on Purple” for loved ones and strengthen the community.
“We need to come together as a (lupus community),” McClair says. “Without each other we cannot do it.”