Patient Story: Parents Raising Awareness for Autoimmune Encephalitis

According to a recent article, the parents of Anyiah Johnson are working to raise awareness for their daughter’s rare diagnosis of autoimmune encephalitis.

Autoimmune Encephalitis

Autoimmune encephalitis (AE) is a type of brain inflammation where the body’s immune system attacks healthy cells and tissues in the brain or spinal cord. It is a rare, complex disease that can cause rapid changes in both physical and mental health. Some patients have antibodies in their blood or cerebrospinal fluid (CSF) which are known to be associated with encephalitis, while others test negative for antibodies but have characteristic symptoms. Certain forms of encephalitis may be associated with some types of tumors, particularly ovarian tumors. AE was recognized as a disease relatively recently. Because of this, some doctors may not be familiar with this condition, and it may be misdiagnosed as a psychiatric or neurological disorder. Early diagnosis and treatment are critical to minimizing both short- and long-term complications of this disease.

Symptoms:

Inflammation in the brain can cause a variety of symptoms, including neurological and psychiatric problems. Symptoms often vary from patient to patient. They can include an sudden decline in work or school performance, loss of the ability to speak, abnormal body movements or seizures, vision loss, weakness of the arms or legs, and sleep problems. Psychiatric manifestations can range from anxiety and mood changes to psychosis with hallucinations, delusions or catatonia. The symptoms typically develop quickly over weeks to a few months. Long-standing psychiatric issues (for many months or years) are not a sign of autoimmune encephalitis.

Treatments:

Treatment varies depending on the severity of the disease. Corticosteroids and other immunosuppressive medications are typically used to control the inflammation in the brain. Some patients may also require medications for seizures or psychiatric symptoms. If an ovarian or other tumor is found, surgically removing it can significantly improve the patient’s AE. Once the underlying encephalitis is controlled, long-term rehabilitation, including physical, occupational and speech therapy, may help patients regain function. 

Anyiah Johnson’s Story

Rosemary and Clyde Johnson from Collinsville, Oklahoma experienced one of the scariest situations that parents can face. Their daughter, Anyiah, was living a normal life as a 12-year-old girl, enjoying basketball and hanging out with her friends, when all of a sudden she had a seizure and was rushed to the hospital.

Following her seizure, the Johnson’s noticed significant changes in their daughter’s behavior. Instead of being her usual bubbly, caring self, she was angry and irritable. She started to act out, injuring herself and others around her, while suffering violent mood swings.

Rosemary and Clyde Johnson reached out to medical professionals about their daughter’s behavioral changes, most of whom recommended that Anyiah see a mental health expert. Despite this recommendation, Rosemary Johnson felt it had to be more than that. Her daughter had experienced no previous mental health issues, they had only come after her sudden seizure. In the end Johnson’s mother’s instinct proved to be right.

Doctors discovered that there was inflammation of Anyiah’s brain, and they diagnosed her with autoimmune encephalitis. Also known as “brain on fire,”Anyiah was suffering from a painful burning sensation on her brain, and her brain was basically attacking itself.

Working to Raise Awareness

The Johnson’s had heard of autoimmune encephalitis before their daughter’s diagnosis through the movie Brain on Fire. However, when their daughter was diagnosed they were shocked that their family would be affected by the nightmarish disease. The rare disease only has about 5 to 8 cases in every 1,000 people, according to the Autoimmune Encephalitis Society. More often than not, patients are misdiagnosed. As a result, the Johnson’s are working to raise awareness for the rare disease so others don’t have to suffer like their daughter did.

The Johnson’s have had the support of their community as they take care of Anyiah, who is still in the Oklahoma Children’s hospital. Community members are doing whatever they can to support the family, including the simplest of tasks. In addition, a GoFundMe has been started to help with the family’s medical bills and expenses.

If you would like to learn more about the GoFundMe or donate, click here.

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