Leah Campbell lost her sight to an unknown illness. Then it stole her ability to move. Could doctors stop the mystery disease before it took her life?
Leah Campbell’s days begin about the time the sun rises. After waking and having breakfast, she answers dozens of emails. Often, she composes just as many new messages.
Throughout the day, Leah spends hours on the phone with fellow patients, helping them navigate the Medicare and Medicaid systems to ensure they don’t miss out on the benefits they need. Earlier this year, she lobbied lawmakers on People with Disabilities Awareness Day at the state capitol. In August, she hosted a fundraising event for a favorite charity at a local restaurant.
Each week, she attends aquatic and equine therapy sessions and a Bible study class. She helps lead a support group and serves as Oklahoma’s ambassador to a patient advocacy organization. This past summer, she started a new job with a company that provides voice-activated smart controls for operating lights, locks, thermostats and other systems around the house.
By the time everything winds down at the Campbell house, it’s usually nearing midnight.
Days this packed would challenge almost anyone. But Leah manages this schedule despite obstacles most of us could not imagine. She is blind, and paralyzed from the chest down.
Leah spent her childhood in Altus, a town of 20,000 or so tucked into the southwest corner of Oklahoma. Her parents, Don and Theresa, taught at the local high school. Don, a biology teacher, brought home a microscope for Leah, as science—along with math—topped her list of favorite subjects.
In grade school, Leah would often set aside part of her lunch to entice animals to follow her home after school. Plied with bits of leftover sandwich, countless dogs and cats found their way to the Campbell house. On occasion, the would-be Doctor Doolittle brought home a snake, reptile or injured bird.
She played tennis, loved to swim and rode horses from the time she was a toddler. She excelled in her classes and hated to miss a day of school.
But on the last day of fifth grade, she was too sick to attend school. “It felt kind of like I had the flu or something,” she remembers. “I just couldn’t get up and go.”
Her mother recalls that day as the start of a long cycle of antibiotics, nausea and doctor visits. Over the summer, Leah’s weight plummeted; her eyesight began to deteriorate.
“We bombarded her with steroids, but she was unresponsive,” says Dr. Bradley Farris, who treated her at the Dean McGee Eye Institute in Oklahoma City. “We had absolutely no idea what was triggering her immune system to do this. To say we were frustrated is an understatement.”
That fall, Leah lost the ability even to see the chalkboard at the front of her classrooms. One morning, as Leah sat in her bedroom, she asked her mother to turn on the lights. They are on, Theresa told her. Leah frantically waved her hand in front of her own face, unable to see it. “What’s happening to me?!” she screamed. At 11, her world had gone dark.
Leah adjusted to her new life without vision. She learned Braille and devised ways to do her schoolwork with the help of other sounds. Her sense of hearing sharpened. Her parents even affixed a beeper to the basketball hoop in the driveway, and Leah could still make buckets.
The loss of her vision sometimes brought on feelings of self-consciousness. “When you’re blind, you can’t see how people are looking at you, so you worry about that,” Leah says. Still, she took part in band, National Honor Society and FFA (previously known as Future Farmers of America), where she particularly excelled. She became an FFA officer, competed in public-speaking contests, qualified for the National FFA Band, and attended a leadership conference in Washington, D.C. She even showed lambs at livestock competitions.
“They wired a two-way radio under my jacket, and I had an earpiece in so the teachers could tell me which way to go when I entered the show ring,” she recalls. “The biggest challenge came when I stepped into the arena, and the battery went dead. Luckily, the ring judge helped me finish.”
Around that time, she was struck by sudden, violent attacks that doctors called paroxysmal spasms.
“It was like she was split in two,” her mother says. “Her right side was fine, but on the left, she would sort of vibrate. Her foot would turn in, her leg would draw up tight, and her hand would clench. Her whole ribcage would spasm uncontrollably.” She’d sometimes experience 40 to 50 of these episodes a day.
She saw pediatric neurologists and ophthalmologists, and endured test after test, but none could pinpoint what was happening. One suspected Lyme disease, while another tested for Rocky Mountain spotted fever. Suggestions ranged from consulting a psychiatrist to a brain biopsy.
The Campbells flew to a nationally renowned medical center, where doctors ran more tests on Leah: a spinal tap, MRIs, blood work, X-rays. Many of their conclusions echoed the ones the family had heard many times before. But one radiologist said he’d only seen lesions in the brain like Leah’s in patients with multiple sclerosis. He and his colleagues concluded she was suffering from relapsing remitting MS, where patients experience recurring disease symptoms over time.
“It was the happiest day of my life,” Leah says, “because I finally had a diagnosis.” Unfortunately, it turned out to be wrong.
After graduating second in her class from Altus High School, Leah attended Rhodes College in Memphis, Tenn. Although she suffered with migraines and multiple relapses, with the help of her guide dog, Precious, she continued her studies. When she earned a degree in mathematics and a minor in business, she became the college’s first blind graduate.
But before she could begin the next chapter of her life, her condition worsened. One Friday, she woke to find her body hypersensitive to touch and all sensation. The next day, she could hardly walk and had to use the wall to stay upright. By Sunday, she couldn’t feel or move any part of her body below her chin.
“I couldn’t even scratch my nose,” she says.
A blur of visits to doctors and hospitals followed. One of those physicians was Dr. Gabriel Pardo. Now the Director of OMRF’s Multiple Sclerosis Center of Excellence, he took Leah under his care.
When Pardo did a comprehensive reassessment of Leah’s case, what he found confused him. A spinal tap revealed large numbers of white blood cells in her spinal fluid, which is uncommon in MS. “That was a red flag,” he says. Still, with no other plausible diagnosis, he continued to treat her with medications targeted at controlling MS.
Over the next three years, although she regained use of her arms, Leah’s health otherwise continued to deteriorate. Whatever this disease was, its flares grew more frequent. The therapies Pardo relied on to tamp down MS seemed to have no effect.
Eventually, he decided to administer a newly developed blood test to Leah. When he did, Pardo finally arrived at a definitive diagnosis for his patient: neuromyelitis optica.
NMO occurs when the body’s immune system launches an assault against its own healthy tissues as if they were harmful invaders. Those attacks primarily target the optic nerves and spinal cord, resulting in inflammation that can cause excruciating pain and vision loss. In some cases like Leah’s, NMO, or Devic’s disease, can invade regions of the brain or brain stem. The illness affects roughly 4,000 Americans, 80 percent of whom are women.
“NMO was initially considered a subset of multiple sclerosis and is so similar to MS that it often gets misdiagnosed,” says Dr. Bob Axtell, an OMRF scientist who holds a pair of grants from the National Institutes of Health to study the disease. “This can be devastating for patients.”
Indeed, that had been the case for Leah. For years, doctors had treated her with a common MS medication called interferon beta-1a, or Rebif. Not only does this medication fail to help NMO patients; it actually worsens their condition.
Pardo immediately took Leah off the drug. Instead, he began treating her with rituximab, an immune-suppressing monoclonal antibody known to control NMO disease activity. And in the 13 years since he started her on that medication, she’s had no relapses. “Her disease activity has been fully controlled,” says Pardo.
Says Leah, “I owe Dr. Pardo my life.”
Still, while regular doses of rituximab have kept NMO at bay, the disease had already run wild in her body for a full 17 years before Pardo began treating her with the drug. “She has deficits that date to before she was a teenager,” he says. “The blindness, the paralysis—unfortunately, those are things we can’t reverse.”
In her bedroom at her home just outside of Oklahoma City, where she lives with her parents, Leah sits in her wheelchair. She’s positioned beside a hospital bed outfitted with a special alternating-pressure mattress that helps lessen incidence of bedsores. Still, she’s going to wound care for an especially severe one and recently underwent surgery for it.
Shelves line the perimeter of the room, stacked with boxes and papers, items of clothing and keepsakes. At one side of her bed sits a small table with a laptop computer, a long list of email messages apparent on the screen. On the other, a bedside table holds her Amazon Echo. “Alexa, what’s on my calendar for next Wednesday?” she calls out. “You have a doctor’s appointment at 9,” the robotic female voice answers.
Theresa enters the room and offers her daughter a glass of water. Leah receives it in her outstretched hands, takes a sip, then lowers the glass.
It’s important for people to understand that she’s not a quadriplegic, Leah says. “I was once, but now I’m only paralyzed from here down”—she gestures to her upper chest. Still, though her hands work, she couldn’t feel the cup she held only moments ago. Heat, cold and even pain don’t register. Her father says he used to pray for Leah to be healed or regain her vision or movement, but these days he just prays for God’s will.
Now retired, Don and Theresa remain Leah’s constant companions, helping her live as full a life as possible. But they’re both in their 70s, and they worry about the future . With knee and back problems, Theresa can’t lift her daughter as often as she once could. But her biggest concern is about what will happen when Don and she are gone. “I want her to be happy and safe and well-cared for, but no one else will take care of her the way we do,” Theresa says, wiping a tear from her cheek.
It’s expensive to live with physical infirmities like Leah’s. When they looked for their home, the Campbells needed a three-car garage to fit their specially equipped oversized van, which cost them $56,000. They also had to remodel the house to accommodate Leah’s needs, adding things like a roll-in shower and an oversized saferoom with a door wide enough for a wheelchair.
Although Leah’s relapses are under control, she requires regular care at OMRF’s Multiple Sclerosis Center of Excellence, where she’s been a patient since Pardo joined the Center as its founding director in 2011. She’s at constant risk for fractures, skin ulcers, bladder and bowel dysfunction; Pardo and his team must remain vigilant to address issues that come along.
For one, rituximab, the drug that has successfully controlled Leah’s relapses for more than a decade, isn’t approved for the treatment of NMO (although another drug, Soliris, recently received approval as an NMO therapy). So, insurers consider rituximab’s use for NMO patients off-label. Without coverage, the annual cost of infusions with the drug would run more than $30,000.
“With Leah, we know insurance will deny it and say it’s not indicated for NMO,” says Pardo. “We have to enlist a case manager and a social worker to get her drugs every time she needs an infusion.” But winning that “uphill battle,” he says, is crucial, as any delay in treatment can cause significant harm to the patient. “So, we’re like a dog on a bone, and we won’t let go.”
Theresa says it’s this devotion to his patients that sets Pardo apart from other doctors. “He’s caring and brilliant, funny and down-to-earth. He comes in, says hello to us and then turns 100 percent of his attention to her. He knows Leah’s blind, but he looks right into her eyes. He treats her like a person, not a disabled person. That’s how it should be.”
Despite the hurdles she faces, Leah remains optimistic about her future. “I’m just a positive thinker. My cup’s always half full.”
She enjoys her tailor-made job, which centers on improving the day-to-day lives of people with physical disabilities. In the spring, she’s looking forward to attending a national patient day conference in Los Angeles. For her 42nd birthday in August, she plans to take a hot air balloon ride, just like the one she enjoyed last summer.
The Campbells are also training a new service dog for their daughter. A chocolate lab, Seaclaid (Gaelic for chocolate) will help Leah become more independent.
At each bend in the road, Leah says, her faith has helped sustain her. It has, she explains, provided her with “resilience through life’s interruptions.” She continues to pray each day for independence.
If that doesn’t come, though, she is at peace with her life. “Don’t feel bad for me for where I am.” There are even silver linings, she jokes. “Like I tell my nieces, I don’t have to feel it when I get shots.”
For OMRF’s Dr. Bob Axtell, patients like Leah drive his search for answers in the laboratory. “The more we understand about NMO, the better the outlook will be for people struggling with this horrible condition.”
Novel insights today, Axtell adds, could lead to new therapies for patients tomorrow. “People are working on those things. We’re working on those things,” he says. “Our greatest hope would be to reverse the damage that’s been done. That’s our holy grail.”
