This week at the spin cycle, we share something we love that everyone else seems to hate or something we hate that everyone seems to love. When it comes to interests and hobbies, my famiy is quite diverse. I, like my mother, am into crafting and reading. Like my father and possibly my husband, I like learning all kinds of new things from Wikipedia or the university library. I, however, am the only one who is interested in psychology and particularly psychiatry. It could be because I’m a nut case myself, though I also love learning about other fields of medicine.
It is not a terribly uncommon interest, but it just sounds weird saying you’re interested in rare diseases. Like, I can’t bring myself to like pages on Facebook on diseases that aren’t at least remotely related to my own conditions, just in case my family believes I’ve decided I have Zellweger Syndrome. For your information: this is a debilitating genetic syndrome from which affected children die early on.
Many people do read inspirational books by people who’ve overcome tragedies, including rare diseases. Brain on Fire by Susannah Cahalan, which I just finished, was a bestseller in the United States and possibly in the Netherlands too. I read the Dutch translation, because my BookShare account has still not been activated (still waiting on my doctor to write the proof of disability thing) and I didn’t want to buy the eBook when the Dutch audio book is available at the library for the blind for free. Anyway, while many people read the book, I’m sure most people didn’t remember every tiny detail on Cahalan’s condition, except for those who think they or their relative might have the same disease. And just so you know, Cahalan does link her condition, anti-NMDA receptor encephalitis, to some diagnoses of regressive autism, but I have no reason to believe I have this condition.
In Brain on Fire, Susannah Cahalan, a reporter at the New York Post, describes the process of her sliding down into madness. For a month during the spring of 2009, for which she herself has no memory, she has seizures and psychotic symptoms and finally becomes catatonic, hardly able to move or talk. Because her parents insist that she be hospitalized on a neurological unit, she is admitted to NYU Medical Center. There, neurologists and psychiatrists are completely baffled as to what is wrong with her. One diagnoses post-ictal psychosis (psychosis after an epileptic seizure), the next diagnoses schizoaffective disorder, and so on. Finally, Dr. Souhel Najjar joins Cahalan’s team after her previous neurologist gives up on her. Najjar thoroughly examines Cahalan and finds, when he asks her to draw a clock, that she places all the digits on the right side of the clock. This causes Najjar to realize that in fact Cahalan’s right brain hemisphere is seriously damaged. It isn’t saidhow he realizes that, in fact, her brain is on fire, being attacked by her own body. It also isn’t too clear what ultimately leads to the diagnosis, because Cahalan gets a brain biopsy but she later writes that only a small portion of people with anti-NMDA receptor encephalitis get brain biopsies.
The NMDA receptor, Wikipedia tells me, is a specific type of receptor for glutamate (a very important neurotransmitter). It is important in learning and memory. When antibodies attack this receptor, the disease Cahalan suffered occurs. Some people experience flu-like symptoms or headaches weeks or months prior to onset of the characteristic symptoms. Usually, the disease starts with behavior changes, which may vary depending on the patient’s age. Children may show violence and increased agitation, while adults may experience psychotic symptoms. As the disease progresses, symptoms may include paralysis of one side of the body, jerky movements (ataxia), autonomic dysfunction (problems with heart rate or blood pressure), or catatonia. These symptoms require urgent medical attention, because the patient may slip into a coma and die.
The book is much more intriguing than my boring summary of Cahalan’s disease. I just love perseverating on rare diseases, like I said, and this is the perfect opportunity.