A mystery illness robbed a Tulsa teacher of life as she knew it. An OMRF physician helped her get it back.
The morning light cast a soft glow around the curtains covering the window. A food service worker pushed racks of trays past the door, leaving the smell of coffee and eggs in its wake. A moment later, a hand pushed open the door to Liz Haughey’s room.
In the semi-darkness of her hospital room in Tulsa, Haughey lay still and watched a nurse walk to the dry-erase board across from her bed. With a quick scrub, the nurse wiped clean the details from the previous day. The whiteboard squeaked as she added new information.
The marker’s acrid smell awakened something deep inside Haughey. The classroom. Her students. She missed each of them dearly.
Squinting, Haughey made out the date the nurse had scrawled on the board: July 28, 2011.
Four months. She’d been in this room, and mostly in this bed, for more than 100 days. Despite the passage of time—despite the doctors, the nurses, the physical therapy, the medications—she remained unable to stand without help. Still dependent on others to do almost everything for her. Still wondering what was happening to her body.
This is it, she thought. I’ll never leave this place. I’m only 28, and my life is over.
Although Dr. Gabriel Pardo had not yet met Liz Haughey in July 2011, he would have understood her despair. He’d seen it countless times before.
After medical school, Pardo trained as an ophthalmologist and then completed a fellowship in neuro-ophthalmology, a field that merges the study of the eyes with the study of the brain. In his fellowship, Pardo regularly encountered patients suffering from complex, systemic diseases that avoided easy classification. The conditions proved difficult to diagnose and harder yet to treat.
Still, Pardo discovered he liked the challenge of decoding these devastating illnesses. As a neuro-ophthalmologist, he knew some eye problems seemed to emanate from faulty “wiring” in the nerves of the brain. It intrigued him enough that he completed a second residency in neurology to learn more about the nervous system and its role in disease.
He found satisfaction in helping patients understand what was happening to them and devising treatment plans that improved the quality of their lives. “Most patients just want an answer,” Pardo says. “They want to identify the enemy, because you can’t have a battle plan until you know what you’re fighting.”
In particular, Pardo found himself drawn to a disease in which the body’s own immune system attacks the insulating layer that protects nerves in the brain and spinal cord. That disease, multiple sclerosis, damages the nervous system’s ability to transmit signals. Although the condition manifests itself differently in each individual patient, symptoms can include dizziness, vision impairment, balance problems, numbness, tremors, extreme fatigue, loss of coordination, and difficulty with speech, memory and concentration.
In most patients, MS starts out in a relapsing-remitting form, with the effects of the disease waxing and waning. Over time, MS progresses, resulting in increasing levels of disability.
MS impacts every aspect of a person’s life, says Pardo, and that’s what makes it such a complicated condition. “In addition, it’s like an iceberg. As many as 15 silent events can occur for each identifiable symptom.” Half of all MS patients will suffer from severe depression, he says. Others may have cognitive issues that affect their employment performance or even their ability to hold jobs. The disease also can impact family, social and interpersonal relationships.
“It’s such a complex disease, and each patient presents a unique challenge to figure out not just what’s happening to them but also to identify the right way to treat their condition,” Pardo says. “So it’s quite rewarding to help someone unravel this disease.”
Pardo decided to focus his career on treating patients with MS. Over the next decade, he built a sizable practice in Oklahoma City, where he earned a reputation as a caring physician who left no stone unturned in an effort to achieve better outcomes for his patients.
Pardo participated in numerous clinical research studies. But he longed to take a deeper dive into MS research. In 2011, he got that chance.
Over a 30-year period, OMRF had built an international reputation as a research leader in diseases like lupus and other diseases of autoimmunity, conditions in which the immune system mistakenly turned its weapons on the body. With the construction of a new research tower, OMRF President Dr. Stephen Prescott saw the chance to add another autoimmune disease to OMRF’s research portfolio: MS.
“The logic of MS is that we had a lot of strength in autoimmune diseases, and Dr. Judith James”—who leads OMRF’s autoimmune disease research efforts—“had already done work in MS,” says Prescott. “But we didn’t have anyone who was focused solely on MS.”
When the opportunity to recruit Pardo arose, Prescott seized it. “Dr. Pardo had an excellent reputation as a clinical researcher. His work with patients would connect to the laboratory and help our researchers answer questions most relevant to the clinic.”
With Pardo signed on as director, OMRF opened its Multiple Sclerosis Center of Excellence in the spring of 2011. The idea behind the Center, says Pardo, is first to be a “one-stop shop” for MS patients, offering clinical care, neurological and ophthalmology services, and physical therapy, as well as a dedicated infusion suite and wellness education. Those clinical services would also act as a catalyst for research, with patient volunteers donating biological samples and participating in studies designed to enable OMRF’s laboratory scientists to delve deeper into the disease’s mechanisms and causes.
“The vision is to create a feedback loop,” says Pardo. “We want to have information flowing from the clinic to the lab and then back to the clinic.” The ultimate goal, he says, is “to make new laboratory insights that can be transformed into therapeutic gains for patients.”
The clinic began accepting new patients in May 2011. Word spread quickly, and by late summer, the Center was on its way to its goal of establishing a regular patient base of 2,000 to 3,000. Physicians throughout Oklahoma began referring their MS patients to OMRF, where they’d receive the specialized care they so desperately needed.
And that would be how Liz Haughey would come to know Gabriel Pardo.
Haughey’s legs provided her with the first clue that something was not right with her body. “I would sort of start to stumble along and couldn’t stop until I ran into a wall,” she says. “Really, I couldn’t control it at all. To watch me during those episodes, people probably would think I was drunk.”
About the same time, she began experiencing numbness in her left leg. As a social studies teacher at Tulsa’s Booker T. Washington High School, she was on her feet all day, so she initially shrugged it off. But it didn’t go away. Instead, the numbness spread up her leg into her left side, reaching her neck and face in a matter of weeks.
“I lost 20 pounds because I couldn’t eat,” she says. “I tried to hide it from my family. It was so hard to eat with half my mouth numb, so I only ate lunch at school to keep up appearances. Very quickly, it started affecting my speech.” When she began having issues with her vision, she knew it was time to see a doctor.
Because of her drooping mouth, the doctor suspected Bell’s palsy, a normally temporary condition where nerves in the face cause weakness and loss of facial movements. He told her to go home and get some rest, and her symptoms should improve. They didn’t.
“When she laughed,” says Haughey’s sister Abbey, “half her face didn’t move. I knew then that something was very wrong. I was so scared for her.”
In a matter of weeks, Haughey needed a cane to walk to her classroom, and her head began to droop as the numbness spread across her neck. By early April, her condition forced her to take a leave of absence from teaching.
On Easter Sunday, Haughey was having great difficulty standing and walking, and her vision had grown blurred. When she tried to get up, she found she couldn’t. She called out, and her brother carried her downstairs, where her family was preparing the holiday meal. But instead of eating, they all sat at the table together and cried.
The next day, Haughey’s doctor checked her into the hospital, where she then spent four frustrating months undergoing a seemingly unending battery of tests and treatment regimens. Yet nothing seemed to work, and her doctors failed to arrive at a diagnosis. When they finally sent her to the Mayo Clinic in Rochester, Minn., an MRI revealed an “explosion” of lesions on her brain and brain stem and extending into her spinal cord. The resulting inflammation, Mayo physicians told her, was interfering with the connections between her brain and her body. They diagnosed her with multiple sclerosis.
“I had dreaded going to Mayo, because I was afraid to get more bad news,” says Haughey. “But I already felt like my life was over, so it was actually a relief to have a name for what was happening to me. But I really had no idea what MS was or what it meant for me.”
A family friend who also had MS knew that Haughey needed a specialist who could help her navigate this new world she’d entered. She suggested Pardo and helped arrange an appointment for her at OMRF.
When she first visited OMRF in August 2011, Haughey needed a wheelchair to get around. The numbness was still affecting her left side, and optic neuritis, inflammation of the nerve that connects the eyes to the brain, had robbed her of much of her eyesight.
Pardo prescribed an infusion of natalizumab, a drug engineered to target the attacking immune cells and inhibit their ability to migrate into the brain tissue. It’s a powerful medicine that works well for many MS patients, particularly those with quick-spreading symptoms like Haughey’s. But even the best treatments come with downsides.
“This medication alters the way the immune system works in the brain,” Pardo says. “You don’t want immune cells attacking myelin”—an insulating layer that protects essential nerve fibers in the brain and spinal cord—“but you still need your immune system to function.” By tamping down the body’s defenses, the drug can cause a range of side effects, from headaches to an increased danger of a rare but potentially fatal brain infection.
Still, Pardo felt the risks were worth taking. “When Liz came to us, the aggressiveness of the disease was overwhelming her. It was important that we initiate equally aggressive treatment.”
At the hospital where Haughey stayed for months, doctors had told her parents that she likely would never walk again. But after Haughey began infusion treatments with Pardo in August 2011, strength and sensation began to return to her limbs. She gradually regained some of her coordination and balance.
In time, she found that she could stand again with the help of a walker. “It felt like Christmas morning,” she says.
Still, her family refused to let her rest on her laurels. If this much progress was possible, what else could she do?
On those occasions when Haughey felt down, “We decided not to let her wallow in sadness or self-pity,” says her sister, Abbey. “We didn’t give her any time to complain. We’d say, ‘Here, take five minutes for a little pity party, but that’s it. Let’s get going!’”
They insisted Haughey join them everywhere they went. Even when the family stayed home, they urged her to do laps in the driveway with her walker. In particular, says Haughey, “My dad really pushed me.”
Each day, Doug Haughey coaxed his daughter to walk a bit farther. When she finally built up the strength to try the half-mile loop around their neighborhood, the effort brought her to tears. By the end, she was taking baby steps, stumbling and leaning heavily on her walker. Yet after 90 minutes, she made it home under her own power.
“My dad was convinced that if my brain could remember how to do something, my body would remember, too. And he was right,” says Haughey. “It was so hard, but he never let me quit.”
Haughey stuck to her daily exercise routine, and her diligence continued to pay dividends. Soon, she was strong and mobile enough to visit her classroom at Booker T with the help of a walker. She could only observe as a substitute taught the lessons, but she now could imagine a light at the end of the tunnel.
When she came to OMRF for her next infusion in September, she asked Pardo about the possibility of returning to teaching. “He never sugar-coats anything with me,” Haughey says. “He looked at me and said, ‘If you think you can, you can.’ That was all I needed to hear.”
Even with her walker, it was a difficult trek from the parking lot to her classroom on the second floor at Booker T. By the time she made it to her class that first day, she was exhausted—but thrilled to be back.
“I could only stand for about one minute before my legs gave out,” she says. To remedy the problem, she arranged to have a recliner stationed at the front of the classroom. “My teacher education professors would probably tell you that no one teaches from an easy chair, but it saved me. It let me do the job I loved.”
With six U.S. History classes to teach each day, Haughey would need the help of her students to get through her rigorous schedule. “I didn’t have a single discipline problem. Not one,” she says. “My students were my helpers when I needed them most.”
As the semester progressed, she set aside her walker for a cane. “Every day was better than the one before,” she says. She found she could stand and lecture for longer and longer periods of time. By the spring semester, she could sometimes make it through an entire presentation without relying on the cane.
She still avoided stairs, but her balance and stamina had improved remarkably. Her monthly infusion treatments at OMRF were paying off. “I felt alive again,” says Haughey, “and I knew I had a lot of living left to do.”
Happily, Haughey’s story is not unique. Yet until recently, a successful treatment path for patients with MS was almost unimaginable, says Pardo. “Treatment options were limited, and new medications were rare.”
In the past decade, though, the landscape has changed profoundly. In addition to natalizumab, which has worked so well for Haughey, the U.S. Food and Drug Administration has approved numerous other disease-modifying drugs. The medications reduce relapses and slow the progression of MS.
OMRF’s MS Center has participated in the research phases of several of those new medications.
“When I began my fellowship, we only had one specific drug on the market for MS. Now we have 14,” says Pardo. “I’ve never seen a revolution of this kind in any other neurological disease. We’ve made dramatic advances, and I expect that to continue in the coming years.”
According to Pardo, a big driver behind those advances has been centers like OMRF, where clinicians can collaborate with researchers who are helping to develop new approaches to therapy and disease management. At OMRF, Dr. Bob Axtell leads those discovery science efforts.
Axtell joined OMRF from Stanford University in 2013. His research focuses on how certain therapies behave differently in patients with MS than in people with other autoimmune diseases like lupus and rheumatoid arthritis. “MS seems to be a very different beast,” he says. “Drugs that have worked in lupus and rheumatoid arthritis actually make MS worse.”
Understanding why is important for the development of new MS medications. And finding new treatments is key, as the current medications all carry side effects—including some that can be life-threatening—and many don’t work for particular patients. Plus, the disease is progressive, and once it harms the central nervous system, no currently available treatments can reverse that damage.
For Haughey, that means her vision will never return to normal levels. Similarly, while she can now stand and walk, she lacks the stamina and mobility she possessed before MS struck her. And over time, despite the success of her current medication regimen, the disease may progress, further robbing her of vision, strength, balance and quality of life.
“We don’t know what tomorrow will bring for her,” says Pardo, “but she’s much improved and has much of her life back in place.” She continues to visit OMRF each month, where she receives an infusion of natalizumab and sees Pardo. “We’ll just have to be diligent in her care and monitor her for the foreseeable future,” he says.
Axtell is acutely aware of the struggles that patients like Haughey face. His lab sits one floor above the Multiple Sclerosis Center of Excellence, so he sees first-hand the toll that MS exacts on those it strikes.
“Bob encounters our patients on a daily basis,” says Pardo. “It provides him with a true reality check, because he gets a tangible picture of the desperate need for continued advances in treatment.”
The effect these interactions have on his work, says Axtell, is profound. “Without my involvement with Dr. Pardo and the clinic, my job would center on experiments in mice and writing papers about what might happen in humans. But here I have the ability to work with Dr. Pardo and his clinical team to access patient samples and ask clinically relevant questions about how the disease works. It’s a rare setup, and it’s a big deal.”
In her classroom, Haughey still keeps that easy chair next to her lectern for the days when fatigue sets in. She also positions fans around the room to keep her from overheating, another effect of her MS. Her vision is permanently impaired by the damage MS did before Pardo began treating her, so when she needs to read something on her computer, her nose nearly touches the monitor.
Haughey feels it’s important not to disguise her struggles from her students. “Kids can see right through you, so there’s no need to hide what’s happening,” she says.
She knows MS will be her constant companion. “I wish I could reach inside my head and take this disease away. But I can’t, so it leaves me with two choices: be angry and sad and wallow in self-pity, or accept it for what it is and, as Dr. Pardo says, live my life.”
Now, says Haughey, that decision is easy. “I choose life.”
While the disease often reminds her of its presence, she won’t let it define her. “MS is terrible, but I’ve found silver linings and blessings along the way,” she says. “No matter what I’ve faced or had to overcome, I’ll show the world a smile.”
One day this past November, two dozen or so teenagers scurried through the door and took their seats in Haughey’s AP U.S. History class at Booker T. Backpacks hit the floor, papers shuffled and conversations faded to whispers as the third-hour bell sounded and Haughey made her way to the lectern. Her cane was nowhere in sight.
“Remember, this is also for ACT prep,” Haughey told her students. “Make sure you take notes on everything we cover today. You’ll need to know it later.”
She flipped on a digital Smartboard that hung at the front of the room, and the first slide of her Powerpoint presentation lit the screen. Within moments, she was pacing back and forth on her orange polka-dotted rug, walking her students through the events leading up to the War of 1812. Her students were scribbling away, hanging on her every word.
It was an entirely unremarkable scene, one that plays out each day in countless classrooms around the world. But for Haughey, the fact that she was standing there at all was nothing short of remarkable.