Lucy Evans

Lucy Evans

British retail supervisor with anti-NMDA receptor encephalitis
Country: Great Britain

Content:
  1. Lucy Evans: A Survivor of Anti-NMDA Encephalitis
  2. The Struggle
  3. The Diagnosis
  4. The Treatment
  5. Life After Diagnosis

Lucy Evans: A Survivor of Anti-NMDA Encephalitis

Introduction

Lucy Evans, an 18-year-old from Aberystwyth, was just hours away from death when doctors discovered that her brain was under attack from a rare disease called anti-NMDA encephalitis. Believing herself to be either a dinosaur or a monkey, Lucy's delusional state was a result of this severe form of encephalitis, which affects only one in 75,000 people. Initially, doctors believed that Lucy needed immediate psychological help, but her mother insisted on investigating her physical health. It was only when one therapist recognized the symptoms of this life-threatening disease that Lucy's condition was properly diagnosed.

Lucy Evans

The Struggle

Lucy's delusions led her to behave aggressively and erratically, often in the presence of others. She recalls, "One day, I started chattering like a monkey and felt that I needed to go to the zoo. The next day, I believed I had become a tyrannosaurus rex and braided my hair, thinking it was my tail." She also compulsively colored coloring books, resulting in blisters covering her hands. Many individuals with similar behaviors end up in psychiatric hospitals, and it was discovered that among them are patients with encephalitis, whose organs fail to function without specialized assistance.

Lucy Evans

The Diagnosis

Lucy's friends and family first noticed her strange behavior in May 2017. She experienced episodes of vomiting, paranoia, and mood swings. Initially, doctors suspected bipolar disorder, which is characterized by manic and depressive periods. However, her symptoms continued to worsen. On June 1, 2017, Lucy had a terrifying seizure where her whole body trembled and her eyes twitched for about two minutes. She was taken to the hospital but was discharged the same day. A few days later, she was rushed to Morriston Hospital in Swansea with a racing heart and rapid breathing. Lucy has little memory of this episode, but her sister captured a video of her incessantly singing Rick Astley's "Angels on my Side" in the car.

Lucy Evans

It was in Swansea that a general practitioner, who had previously treated another patient with encephalitis, connected Lucy's strange behavior to this life-threatening illness. Lucy credits this doctor with saving her life, stating, "She saved my life. It is crucial to correctly recognize the symptoms in order to prescribe the right treatment."

Lucy Evans

The Treatment

After undergoing scans to detect possible tumors and assess brain inflammation levels, Lucy began intensive treatment. She received intravenous steroids for 12 hours a day for five days. This procedure helps combat the white blood cells attacking the brain. The second stage of treatment involved receiving plasma enriched with antibodies for 6-7 hours a day for another five days.

Lucy admits that the first two stages were less effective than expected, and the doctors informed her family that if the third stage did not work, there would be nothing more they could do. During the final stage, Lucy received Rituximab, a medication that reduces the number of B-lymphocytes attacking the brain. This treatment caused severe headaches.

After spending seven weeks in the hospital, Lucy was discharged. However, she continues to face the consequences of anti-NMDA encephalitis. She says, "I had to start with simple, childlike steps. I would slowly walk outside for a short time. The disease has affected my nervous system. If I walk too much, my leg starts to ache, and my hands move involuntarily."

Lucy also struggles with loss of appetite and thirst due to her damaged signaling system. She must remember to drink water with her medications, as her body no longer sends signals of hunger or thirst. She states, "My memory capacity is only about four days. Anything that happened more than 96 hours ago is extremely difficult for me to recall."

Life After Diagnosis

Lucy admits that she will not be able to return to work until at least January and currently takes 24 tablets a day. She believes that she will have to rely on medication for the rest of her life, as the disease can resurface at any time. Despite her ongoing struggles, Lucy considers herself lucky to be alive.

Lucy was in a relationship when she was diagnosed with anti-NMDA encephalitis, but her partner broke up with her after she was hospitalized. However, in July 2017, 24-year-old Morgan Stenstrom reached out to Lucy and not only helped cover her medical expenses but also visited her in the hospital every day. They soon became inseparable, and Lucy credits Morgan for giving her confidence and helping her return home. She says, "My mom believes that if it wasn't for Morgan, I would have had to stay in the hospital much longer."

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