https://youtu.be/8c-W_LBPQhs

PANS is a rare brain illness that many people aren’t aware of. It stands for Pediatric Acute-onset Neuropsychiatric Syndrome. It can be caused by other illnesses such as Lyme disease, mycoplasma, or walking pneumonia. The subset of PANS is PANDAS, which is the same illness but caused by strep throat. PANS can have many effects on a person’s life. Some of the most common effects are OCD, TICS (a repetitive sound or movement that is hard to control), hallucinations, extreme anxiety, new fears, the loss of skills like handwriting or knowledge of math, or just generally acting young for one’s age.

I was lucky enough to have the opportunity to interview one of my classmates, Emily Russell, who was diagnosed with PANS in the 3rd grade. She is a beautiful and talented young lady who has been an inspiration to me. Although Emily doesn’t have PANS anymore, she still has some leftover OCD. She has an amazing story to share with us. 

Emily’s first experience with PANS occurred when she went to school after recovering from walking pneumonia in 3rd grade. With the memory of her parents telling her she had long piano fingers stuck in her mind from the morning, Emily stuck up her middle finger to show her friend her long fingers, not knowing that the gesture was offensive. The friend instantly told her that it was bad to stick up the middle finger, which is when PANS jumped into effect. Emily began to panic about the situation for an entire week. That’s when her parents knew something was wrong and they started to do some research. Two weeks later they realized she had symptoms of PANS. They went to the Stanford PANS Clinic in Santa Clara, one of few places that treats this illness. Her parents described how sometime during that week Emily had her hands flat on the table but she kept on claiming she was sticking up her middle finger to the doctors. Shortly after that, in January of 2014, she started treatment for the syndrome.

A very helpful piece of information Emily Russell shared with me is that the easiest way to explain PANS to people is, “a child gets sick and instead of the body attacking the virus, it gets confused and begins to attack the brain instead.” Initially, Emily suffered from the fear of lying and questions. If someone asked her how her day was going, she would panic and tell them “don’t ask questions.” She would also have hallucinations, such as thinking objects in the store were sticking to her, that she was a robot, that poison was seeping out of her skin, and that she was making her washing machine explode. Emily would sometimes question if she was even the daughter of her parents. However, her medication, called IVIG, was very effective. For a while, she had to take IVIG 8 hours a day for 3 days in a row. This would alleviate her symptoms for a few weeks. It has now almost completely healed her.

Emily is very thankful that she “got off easy” because she was treated early, but some people aren’t as fortunate. For example, Emily’s friend has more severe PANS because she couldn’t get treated early enough. Sometimes, if children with PANS can’t get treatment early enough, they get something called exacerbation. Exacerbation is the increased severity of symptoms of the disease. It tends to increase the duration and intensity of each episode. Exacerbation can also cause permanent weakness in regular activities. In some cases, exacerbation can cause encephalitis, which is the inflammation of the brain and can cause headaches and confusion. 

PANS taught Emily that “it’s not worth stressing over the little things, it’s not worth holding onto things.” She also wants people, especially the parents of kids with this illness, to remember when you have this illness that it’s hard to control and that “your child is still there.” She advises parents to just sit with their child and talk everything out because they really need someone there for them.

Emily described to me how music was her outlet then and remains so. With PANS, you tend to lose interest in things. However, for her, music was simple and helped relieve her stress. It was the only thing that made Emily feel like she did before she was diagnosed. 

She helps raise awareness through a song she wrote herself called “Brain on Fire: My Song, my Story” which is on her Youtube channel under her full name, Emily Eve Russell. Her song is based on her experience with PANS and the story of Susannah Cahalan, another woman that was diagnosed with the illness. Emily helps raise awareness through music because she feels like people “connect with music emotionally and in a different way” than reading something online. 

What we can do to help is research PANS and educate ourselves on it, post something on social media on PANS Awareness Day on October 9th, or donate, because there aren’t a lot of clinics that help treat the disease. Some websites you can visit to learn more are pandasnetwork.org and med.stanford.edu/pans.

Thank you for reading this and please continue to educate yourself and others on this rare brain illness. Also, thanks to Emily for sharing her story.