Below is a video from the YouTube channel Our Grandfather Story (OGS), which raises awareness about overlooked stories across Southeast Asia. In this video, OGS interviews people with autoimmune diseases to ask them questions like, “Are you really sick?” “Can you be cured?” and “Should I pity you?” I found the video to be very relatable, especially as someone with an invisible illness, and I liked how they talked about some of the mental health impacts of chronic illness as well.
The participants in the video live with the following conditions: myasthenia gravis (MG), primary sclerosing cholangitis, autoimmune hepatitis, ulcerative colitis, autoimmune encephalitis, and lupus nephritis.
Thank you to OGS for raising awareness about autoimmune diseases; I hope my readers enjoy the video as much as I did!
Nate Kenoe was a vibrant, energetic 4-year-old boy. Unfortunately, he had had a string of illnesses, testing positive for strep throat five times over the course of eight months. Each time, it wasn’t immediately clear that Nate had strep throat- oftentimes, he didn’t even have a sore throat! Instead, he presented with less common symptoms, such as bad breath or a sore on his butt. When he would finally get diagnosed with strep throat, he had to take a less effective antibiotic treatment, due to his allergy to penicillin.
Eventually, Nate developed even more disturbing symptoms that weren’t in line with strep throat. He began to have sensory issues, feeling pains in his feet as if he were walking on rocks, experiencing coldness in his shoulders, and other tics. He also had dramatically changed behavior, including vomiting at the sight of food, urinating multiple times an hour and banging his head.
Thankfully, an attentive pediatrician recognized Nate’s symptoms as pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection, known as PANDAS for short. PANDAS is a little-known autoimmune disease primarily occurring in children between the ages of 3 and 12. With this disease, strep throat opens the blood-brain barrier, allowing abnormal immune cells to enter the brain and cause neuro inflammation. It has been compared to autoimmune encephalitis (AE), another autoimmune neuropsychiatric disorder.
The PANDAS network estimates that 1 in 200 children could have PANDAS; however, this autoimmune condition is often under-diagnosed or misdiagnosed due to its similarity with other conditions such as Tourette’s syndrome and Obsessive-Compulsive Disorder (OCD). Nate’s own mother, a pediatric nurse, hadn’t even heard of the condition before.
Nate received antibiotics, anti-inflammatory medications and had a surgery to remove his tonsils as a treatment for his PANDAS. As her son received treatment, his mother learned that PANDAS is in fact a controversial disease. Many physicians are skeptical that this autoimmune disease even exists, while others believe that there needs to be a standardized method for diagnosis and treatment.
One year later, Nate is faring much better than last year. However, if he gets sick, such as with a cold or virus, it will trigger another autoimmune ‘flare’ resulting in more sensory issues. Ultimately, Nate’s family hopes that by sharing his story, they can raise awareness about PANDAS, and in turn, help the disease get more research funding.
To learn more about PANDAS and Nate’s story, click here.
Robert Given was a 71-year-old Accountant who ran his own CPA firm and was heavily involved in his local community. Although he didn’t have any prior history of autoimmune disease, he suddenly found himself impacted by a severe autoimmune condition.
While dining out with friends, Given suddenly slumped over, had a seizure, and urinated on himself. Restaurant patrons helped him to lay on the floor and called an ambulance. By the time the ambulance arrived, he had regained consciousness but was confused, refusing to step into the ambulance until his wife told him to.
After being evaluated by a number of physicians, including an internist and a neurologist, the medical professionals made several interesting discoveries. Given had had a sudden drop in blood pressure that was uncharacteristic for someone with well-controlled high blood pressure like himself. His wife also reported that he was losing his balance, had difficulty sleeping and sometimes had slurred speech. He was also highly talkative, to the point that it appeared to be logorrhea – a constant need to talk, even if the speech is often incoherent and repetitive.
Given had a second seizure, and was once again transported to the hospital. After this second episode, his doctor pondered what condition could possibly cause a sudden onset of both neurological and psychiatric symptoms. He hypothesized that his patient might have either Multiple Sclerosis (MS), or some type of heavy metal toxicity and ordered a round of tests to see if this was the case.
The tests came back negative for MS and heavy metals, and his medical team thought that they had to go back to the drawing board. Suddenly, however, his internist Dr. Hersch realized that he had seen a similar case several years prior; the patient had died, but his test results had revealed that he had autoimmune encephalitis (AE), a group of conditions in which the immune system mistakenly attacks the brain.
Dr. Hersch ordered a new round a tests that confirmed that Robert Given did indeed have a type of autoimmune encephalitis caused by a rogue antibody called CASPR2. Symptoms included fluctuations in blood pressure and heart rate, loss of balance, insomnia, and personality changes, and the majority of patients were men over the age of 65- just like Given!
Given has been receiving treatment for his condition at the Mayo Clinic for the last three years. Due to the difficult nature of this disease, his recovery is slow, but he is relieved to have been diagnosed in time to receive life-saving medication.
The Autoimmune Encephalitis Alliance says that while Given is lucky to have received a diagnosis, their aim is to raise awareness so that others with AE do not have to rely on luck to determine the outcome of the disease.
To read the original story by Dr. Lisa Sanders from the New York Times, click here. Also, check out this trailer for Brain on Fire, a movie based on a real-life story of a woman with AE.