Select Page
From College Soccer Player to Survivor of Autoimmune Encephalitis

From College Soccer Player to Survivor of Autoimmune Encephalitis

September 2, 2020 | By Matt Martin

Article first appeared on the UC Health Media Room

Laura Martin is a 20-year-old college student from Winchester, Kentucky, right outside of Lexington. She was a Kentucky Governor’s Scholar and student at Transylvania University, as well as a standout goalie for the university’s women’s soccer program.

In August 2019, Laura’s future was on the rise. But in a matter of a few days, she and her family were soon facing their lowest moment. Her health suddenly declined. And no one knew if this promising student and gifted athlete would make it past 20 years old.

As she was getting ready for her sophomore year and second season with the women’s soccer team, Laura started behaving differently. Her friends began to notice she wasn’t herself. They told her family, who also noticed a drastic change in Laura’s behavior.

Laura wasn’t sleeping and started having intense paranoid delusions, acting in a way that was completely unrecognizable to her friends and family.

“I didn’t even know who this girl was,” Keri Martin, Laura’s mother, said.

Laura’s condition continued to decline. On Aug. 28, 2019, her family decided to take her to the Emergency Department at a Lexington hospital close to where they are from. When the family arrived, they were told that Laura was suffering from mental illness. Doctors took Laura into the behavioral health unit to be placed on a 72-hour hold.

With no family history of mental illness, Keri requested neurological testing for her daughter. But Laura’s doctors were dismissive of her request, and released her from the hospital after seven days without any solution to her symptoms.

“I thought this was how life was going to be for me now,” Laura said. “Coming back from the hospital was hard. Not being in school and missing my friends was difficult.”

Although Laura seemed better when she returned home, she immediately reverted back to behaviors that frightened her family. After having a poor experience at another healthcare system, Keri and James, Laura’s father, didn’t know what to do. They had many sleepless nights as they tried to take care of their daughter. With help from other family members, they watched Laura around the clock as she got worse day by day.

Laura wasn’t able to sleep and couldn’t walk, write or remember who her family members were. She was losing her cognitive ability at an alarming rate and she could no longer take care of herself for basic tasks.

“As a family, we were broken and at the bottom. There was nothing that could be worse than this,” Keri said.

Keri fought to get Laura in to see a neurologist in Lexington, only to be once again rejected by another physician. The family was told that Laura should be sent to a behavioral health unit. Keri felt that if they sent Laura back to a psychiatric facility, she would die there.

“We didn’t know what to do or where to go,” Keri said.

Running out of time and answers, Laura’s parents decided to bring her to Cincinnati to UC Health, home to the region’s No. 1 preferred provider for neuroscience care.

Immediately upon arrival at University of Cincinnati Medical Center on Oct. 9, 2019, the Martin family knew this experience would be different. Clinicians compassionately spoke to the family and quickly arranged for Laura to have a private room in the neurological unit.

Laura’s treatment when she arrived at UC Medical Center was led by Jordan Bonomo, MD, UC Health neurologist, associate professor in the Department of Emergency Medicine and director for Neurocritical Care Fellowship at the UC College of Medicine.

An experienced group of residents and nurses made Laura’s family feel at ease, leaving them with a glimmer of hope for the first time in months. One resident involved with Laura’s care even told her family that she would advocate for her.

Another resident, Laura DiDomenico, MD, remained in the unit with Laura even after her rotation ended so she could see her treatment through. Laura’s entire care team was united and committed to finding out what was wrong and how to save her life.

“It was an entirely different experience from the moment we walked through the doors of the Emergency Department,” Keri said.

Laura’s Recovery after having “Brain on Fire”

Laura had an EEG that revealed she was suffering from many small seizures, leading to her unusual behavior. The seizures were part of a neurological disease called Autoimmune Encephalitis, which refers to a group of conditions that occur when the body’s immune system mistakenly attacks healthy brain cells, leading to inflammation of the brain. This condition is often referred to as “brain on fire.”

Her family suspected this was the reason for Laura’s rapid health decline, but it wasn’t until they came to UC Health when this was confirmed. No other healthcare system in Lexington would even consider offering Laura neurological testing.

Over the next 12 days at UC Medical Center, Laura’s care team worked tirelessly to find a way to improve her condition. Joseph Broderick, MD, director of the UC Gardner Neuroscience Institute and professor in the Department of Neurology and Rehabilitation Medicine at the UC College of Medicine, took over Laura’s care on her third day in the hospital.

“Inflammatory disorders of the brain can be devastating and challenging to diagnose,” Dr. Broderick said. “But patients can also respond dramatically to the correct treatment.”

In order to improve her condition, Laura started Intravenous Immunoglobin (IVIG) treatment, which is used to treat various autoimmune diseases. The first couple days were difficult for Laura and her family, but as time wore on, her condition gradually improved.

By Oct. 21, 2019, Laura had completed her IVIG treatment and was well enough to return home. Laura’s treatment included IV steroids, and to this day, she continues using oral steroids. Both of these have contributed to her improved condition.

After discharge, she continued to improve further and subsequently went back to work while waiting to restart college. “Laura is a walking miracle,” Keri said.

“It’s gratifying to see such a positive response from Laura. We are very proud of our treatment team who made the diagnosis and started her on the appropriate therapy,” Dr. Broderick said.

Post-hospital treatment, Laura is seen by Aram Zabeti, MD, director of the Waddell Center for Multiple Sclerosis at the UC Gardner Neuroscience Institute and associate professor in the Department of Neurology and Rehabilitation Medicine at the UC College of Medicine.

“As the region’s academic healthcare system, we are proud of our ability to diagnose and treat rare diseases such as Autoimmune Encephalitis,” Dr. Zabeti said. “Early intervention in Laura’s devastating disease saved her education, productivity, family and even her life.”

Handling the COVID-19 Pandemic

When the COVID-19 global pandemic began, Laura’s family made sure to keep a close eye on her to protect her from possible infection due to her compromised immune system. Laura continued her post-hospital steroid therapy during the pandemic. Unfortunately, she wasn’t able to continue her part-time job she recently started, as the store she worked at temporarily closed to prevent the spread of COVID-19.

With the help of Dr. Zabeti, Laura successfully completed her steroid therapy and is no longer considered immunocompromised. She will be able to return to her part-time job when the store reopens.

Going from a healthy, successful college student-athlete to a neurological patient was something Laura could never have expected. She and her family went through adversity, frustration and fear along the way. But now, Laura is able to return to her life she had to give up prior to her diagnosis.

She’s able to sleep, walk, drive and work. Her next goal is to return to college in August 2020 and complete her bachelor’s degree in English with a minor in Secondary Education.

“It’s amazing to know that I have a condition that I can live with, that’s also treatable,” Laura said.

After being written off by other healthcare systems, Laura and her family found hope at UC Health. They know where to go in the future if anything happens.

“Everyone went out of their way to help Laura and all of us,” Keri said. “UC Health gave us our daughter back.”

 

Your generous Donations allow IAES to continue our important work and save lives! 

seal - From College Soccer Player to Survivor of Autoimmune Encephalitis

 

 Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - From College Soccer Player to Survivor of Autoimmune Encephalitis

 For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - From College Soccer Player to Survivor of Autoimmune Encephalitis 

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

 

 

 

Treatments for Autoimmune Encephalitis

Treatments for Autoimmune Encephalitis

June-24-2020 | Carolyn Keating, PennNeuroKnow

As the name suggests, autoimmune encephalitis (AE) is a group of diseases in which the body’s immune system attacks the brain.  To treat it, there are a variety of therapies that target different aspects of the immune system.  The goal of these immunotherapies is to reduce brain inflammation and the resulting symptoms, as well as maintain these improvements by preventing relapses1.

Immunotherapy is most successful in patients with antibodies against cell-surface proteins (such as NMDR, LGI1, and Caspr2).  These diseases tend to be caused by B cells and autoantibodies.  In contrast, when antibodies are directed against molecules inside of cells (such as Hu, Ma, or GAD65) the disease is usually mediated by T cells, and these patients typically do not respond as well to immunotherapy.  It should also be noted that removal of any disease-associated tumors, such as the ovarian teratomas frequently seen in NMDAR encephalitis or tumors seen in patients with intracellular antigens, should be an early treatment priority as removal quickly produces improvements2.  However, there are currently no standardized treatment guidelines; at present, different regimens are used based on the patient’s particular condition and clinical status, as well as the opinion of their doctor.

iv-dripFirst-line Treatments

The first treatment for most patients is typically steroids, also calledcorticosteroids.  Corticosteroids act to broadly inhibit inflammation in multiple ways, which results in the depletion of mainly T cells.  They offer the additional benefit of restoring the blood-brain barrier (BBB), which can be impaired in

 AE. However, corticosteroids aren’t perfect.  They have many side effects, and can aggravate or even induce psychiatric symptoms associated with AE such as depression, insomnia, agitation, and psychosis.  What’s more, corticosteroids do not target B cells, the cells that go on to produce the antibodies that cause many of the symptoms of AE3.

Two other first-line therapies do target autoantibodies.  One is administration of intravenous immunoglobulin (IVIg). IVIg is a blood product prepared from the serum of more than 1,000 donors that contains a broad range of antibodies. Some of these antibodies target a patient’s autoantibodies and neutralize them, along with other pro-inflammatory aspects of the immune system3.  The other first-line treatment targeting autoantibodies is plasma exchange (PLEX, also called plasmapheresis). PLEX “cleans” the blood of autoantibodies by replacing the liquid plasma portion of a patient’s blood with that of a donor.  PLEX also changes T and B cells in favorable ways.  A more refined form of PLEX called immunoadsorption has also been used to treat AE, and selectively removes antibodies from the blood, instead of all the other components that are also in the plasma3.  However, both PLEX and immunoadsorption only remove antibodies from the blood, not from the brain; although decreasing antibodies in the blood can lead to a decrease in the brain4.  Furthermore, all first-line treatments but especially PLEX require a good deal of patient compliance, which can limit their use if the patient is agitated or displays other behavioral problems5.

Different subtypes of AE respond differently to treatment.  For instance, patients with LGI1 antibodies who are diagnosed early are often responsive to corticosteroids alone.  In contrast, only about 50% of patients with NMDAR antibodies are responsive to first-line treatments, and the remaining require second-line therapies6.

Second-line Treatments

There are two main second-line immunotherapies for AE. The first is a drug that destroys B cells called rituximab.  Rituximab is actually an antibody that targets B cells, which normally go on to become antibody-producing cells.  It is expected to work particularly well in patients with LGI1 and Caspr2 autoantibodies. However, because B cells can cross into the brain and become antibody-producing cells, but rituximab cannot cross the BBB, its effects may be limited3.

The other second-line treatment is a chemotherapy drug called cyclophosphamide. Cyclophosphamide directly prevents T and B cells from multiplying, but it affects the ability of many other cells to multiply as well.  For that reason, it has some potentially serious side effects including infertility, and instead rituximab is usually the preferred second-line therapy3.

Alternative Treatments

Sometimes second-line treatments are also not effective at treating AE.  When that happens, options include re-administration of first-line therapies, extended use of second-line therapies, or use of other non-steroid (steroid-sparing) drugs to suppress the immune system. For instance, the steroid-sparing drug mycophenolate mofetil prevents T and B cells from multiplying and has a better side-effect profile than cyclophosphamide3.

Other alternative treatments are also available.  One option interrupts the inflammatory effects of a molecule called interleukin-6 (IL-6).  Normally, when IL-6 binds to its receptors on immune cells, it causes B cells to multiply and mature into antibody-producing cells, and causes pro-inflammatory T cells to mature. The antibody drug tocilizumab targets the IL-6 receptor and prevents these inflammatory processes.  A molecule related to IL-6, IL-2, is also a target.  Instead of inhibiting this molecule, giving patients low doses of IL-2 activates a “good” type of T cell called regulatory T cells that help the body shut down autoimmune responses.  Another option, bortezomib, directly targets antibody-producing cells, instead of their immature B cell precursors3.

Maintenance Treatments

Even if AE is successfully treated, sometimes the disease can relapse.  Relapses could be caused by some antibody-producing cells that can survive for many months, which are not targeted by treatments.  Many of the therapies described above, including the first-line treatments, steroid-sparing agents, and rituximab, have been used as maintenance therapy to try and prevent this from occurring.  However, the length of time patients should continue to receive treatment is unknown, and can range from 6 months to several years depending on the patient’s condition and doctor’s opinion3.

In addition to immunotherapy, other important aspects of treatment include supportive care (particularly while in the hospital); treatment of symptoms such as seizures, spasms, and psychiatric issues; and rehabilitation1.  While responses to tumor removal and immunotherapy are often seen within a few weeks, it may take years for patients to return to normal7.  As more is discovered about which aspects of the immune system are involved in each subtype of AE, hopefully more directed treatments will become available.

J

 

IAES PNK Partnership logo 500x419 - Treatments for Autoimmune Encephalitis

 

Your generous Donations allow IAES to continue our important work and save lives!

 

seal - Treatments for Autoimmune Encephalitis

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

Trivia Playing cards 3 FB 500x419 - Treatments for Autoimmune Encephalitis

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune EncephalitisReferences

 

1. López-Chiriboga, A. S. & Flanagan, E. P. Diagnostic and Therapeutic Approach to Autoimmune Neurologic Disorders. Semin. Neurol. 38, 392–402 (2018).

  1. Seki, M. et al. Neurological response to early removal of ovarian teratoma in anti-NMDAR encephalitis. J. Neurol. Neurosurg. Psychiatry 79, 324–326 (2008).
  2. Shin, Y.-W. et al. Treatment strategies for autoimmune encephalitis. Ther. Adv. Neurol. Disord. 11, 1–19 (2018).
  3. Fassbender, C., Klingel, R. & Köhler, W. Immunoadsorption for autoimmune encephalitis. Atheroscler. Suppl. 30, 257–263 (2017).
  4. Damato, V., Balint, B., Kienzler, A. K. & Irani, S. R. The clinical features, underlying immunology, and treatment of autoantibody-mediated movement disorders. Mov. Disord. 33, 1376–1389 (2018).
  5. Varley, J., Taylor, J. & Irani, S. R. Autoantibody-mediated diseases of the CNS: Structure, dysfunction and therapy. Neuropharmacology 132, 71–82 (2018).
  6. Venkatesan, A. & Adatia, K. Anti-NMDA-Receptor Encephalitis: From Bench to Clinic. ACS Chem. Neurosci. 8, 2586–2595 (2017).

 

Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Autoimmune Encephalitis Trivia Playing Cards

Translate »