Happy to Give Back to Mayo Clinic After Battling Rare Autoimmune Disease
Erin Ayub spent months in a medically induced coma as her Mayo Clinic care team worked to fight off a rare and dangerous form of encephalitis. Today, Erin has made a remarkable recovery, and now as a Mayo staff member, she’s eagerly working to help further the mission of the health care organization that saved her life.
From the outside looking in, Erin Ayub, an administrative assistant at Mayo Clinic in Arizona, appears to be a healthy 29-year-old woman. To see her now, no one would guess that she once spent months in the hospital battling through a rare autoimmune disease.
For a time, it wasn’t clear if Erin would survive. But with the expert care of her Mayo Clinic team, she did. Now Erin is giving back to the place that saved her life eight years ago.
Puzzling symptoms
In 2011, Erin was a college senior working
toward her bachelor’s degree in business administration with a concentration in
computer information systems. She lived in El Paso, Texas, with her parents and
brother. In her free time, Erin led an active life as a musician and kickboxer.
She also enjoyed cosplay — performance art that involves dressing up as a
character from a movie, book, television show or video game.
While on a family vacation that year, Erin
began to feel nauseated, and she started acting differently. She woke up
earlier than usual, experienced brain fog and continued to battle bouts of
nausea. Erin’s symptoms continued for several months. Then her health declined
further during finals weeks when she went to take an exam and struggled to fill
in the first blank.
“I couldn’t remember how to write my name,”
Erin says. “I knew my name. But to actually write it? I couldn’t.”
“I vaguely have a memory of being in a stretcher, leaving my house with flashing red and blue lights. That’s the last thing I remember.”
Erin Ayub
Her mother, Liz, thought Erin’s symptoms could be due to stress during finals season. But the oddities continued when Erin walked around the house and turned lights on and off without cause. Liz describes it as “a zombie state.” Then one December night, when her mother was helping her to bed, Erin began to have seizures.
“I vaguely have a memory of being in a
stretcher, leaving my house with flashing red and blue lights,” Erin says.
“That’s the last thing I remember.”
Erin was rushed to a nearby hospital, where
her condition puzzled doctors. Erin continued to experience seizures throughout
her time there, flatlining during one of them. After that, doctors put Erin in
a medically induced coma and recommended sending her to Mayo
Clinic.
Rare condition identified
Erin was airlifted to Mayo Clinic Hospital in Arizona while on life support. When she arrived, her care team ran tests and diagnosed her with a rare autoimmune neurologic disease that affects the brain called anti-NMDA (N-methyl-d-aspartate) receptor encephalitis.
Over the course of this disease, the body
attacks NMDA receptors with antibodies. “The NMDA
receptor is a receptor on the brain that we use for neurotransmitters,”
explains Matthew
Hoerth, M.D., a Mayo Clinic neurologist and a member
of Erin’s care team. “If you’re attacking that transmitter specifically,
you’re not able to process information from one cell to the next, and that can
lead to seizures and cognitive disturbances.”
Erin’s diagnosis came on the heels of the
disease’s initial discovery, and little is known about the condition even
today. At the time of Erin’s diagnosis, few case
series had been published about it. Erin says she was estimated to be the 600th
patient diagnosed. Dr. Hoerth
says this number is fairly low only because doctors are discovering the
anti-NMDA antibodies now. He says there is a possibility that more patients have
the disease but have gone undiagnosed.
For her first several months at Mayo, Erin
remained in a coma, and she had nonstop seizures. During that time, her care
team did everything in its power to save her life. Erin was given several
immunosuppressant medications to prevent her immune system from creating more anti-NMDA
antibodies. She also had an ovary resection. In an attempt to ease her
seizures, Erin was put on a strict ketogenic
diet that cut out all carbohydrates, even those
in her shampoo.
“It was highly
specialized,” Liz says. “The team met every day to determine what
type of medication changes were done because they had to adjust her feeding
based on the medication.”
The hope was that if ketones fueled Erin’s
brain instead of glucose, the seizures would stop. Whether the treatment worked
is difficult for doctors to determine, but Erin stopped seizing as often.
“You have a couple of choices. Either you fall apart or you pull together. And we were lucky that we pulled together.”
Liz Ayub
Finally putting a name to her daughter’s
condition was a relief for Liz, but Erin’s situation was serious. Several
times, doctors prepared her family to expect the worst. They refused to give up,
however, and banded together in unwavering support for Erin. During her
daughter’s hospital stay, Liz lived in Phoenix with Erin full time. Erin’s
father, a professor at El Paso Community College, took a bus to Phoenix every
weekend and headed back in time to teach during the week. Erin’s younger
brother, an incoming college freshman at the time, held down the fort in El
Paso. Dr. Hoerth credits Erin’s recovery in part to her supportive family.
“You
have a couple of choices,” Liz says. “Either you fall apart or you
pull together. And we were lucky that we pulled together.”
It wasn’t only her immediate family who
rallied around Erin. Mayo Clinic staff also gave her their full support. “I
consider so many people there family, not caregivers,” Liz says.
The road to recovery
With treatment keeping her seizures under
control, Erin’s team felt comfortable bringing her out of the medically induced
coma. When she woke up, Erin recalls that it felt like she had taken a long nap.
In reality, she had been in a coma for eight months, and she needed to relearn
how to do everything from eating to speaking.
“When I woke up, I had
to start from scratch,” she says. “It’s like being a toddler all over
again.”
Having a passion for writing and being an
avid reader, Erin quickly recovered her reading and writing skills,
communicating with her family through a whiteboard. When she was discharged
from the hospital, Erin continued outpatient rehabilitation
for a few months at a skilled nursing facility in Phoenix, where she received
speech, physical and occupational therapy.
“Erin, even though she didn’t realize it at the time, is a fighter. This is a remarkable recovery. This does not happen often.”
Matthew Hoerth, M.D.
Erin
then returned to Mayo, where she had surgery for a back ulcer and entered the
acute rehabilitation program. In
the program, Erin worked on her mobility, first using a wheelchair and then a
walker after a month. After that, she spent another year undergoing
outpatient rehabilitation at a neuro-rehabilitation facility in El Paso.
“Erin, even though she
didn’t realize it at the time, is a fighter,” Dr. Hoerth says. “This is
a remarkable recovery. This does not happen often.”
At the end of 2013, Erin decided it was time to go back to school. Her mother suggested trying one class a semester, but Erin finished the seven remaining classes for her major in just two semesters. Not only did she finish all her classes, Erin went on to earn master’s degree in English and creative writing. She also picked up kickboxing and cosplaying again, and she’s received awards for her cosplaying in competitions.
And back to Mayo
In El Paso, Erin searched for a job after
working at a local humane society, but nothing stuck out to her. With her Mayo
experience still fresh in her mind, Erin found an opportunity as an
administrative assistant at Mayo Clinic in Arizona. She sent in an application
and received a job offer several weeks later.
The thought of moving away from home was
daunting. But as Erin reflected on the care she received, she knew Mayo Clinic
would take care of her again. Although in her new job she doesn’t work with
patients directly, Erin knows her work makes a difference.
“I schedule for a couple
of administrators, and it’s kind of giving back, even though it’s indirect,”
Erin says. “If I make their jobs easier, then they can help make their
team’s job easier, and that trickles down. This has become a bit of a second
home as much as I was here.”
For
Liz, Erin’s job is a reminder of how far her daughter has come. “When Erin
got the opportunity to work for Mayo, she was thrilled about it,” Liz
says. “I just thought: ‘We’ve come full circle. Hopefully there’s something
positive there — something she can do to pay back what Mayo did for us.'”
Watch
this video to learn more about Erin’s story:
HELPFUL LINKS
- Learn more about encephalitis.
- Read about Mayo Clinic’s Department of Neurology.
- Visit Mayo Clinic Hospital in Arizona.
- Explore Mayo Clinic.
- Request an appointment.