Dutch Skating Champion Lara van Rujiven Dies from Autoimmune Disease

Speed skating champion Lara van Rujiven passed away from complications due to an autoimmune disease on Friday night, the Dutch Speed Skating Association KNSB has reported.

The 27-year-old gold medalist athlete was admitted to a hospital in Perpignan, France on June 25 with symptoms indicating that her immune system was compromised. She began to experience internal bleeding, including in her brain, and underwent two operations while being kept in an artificial coma.

Sadly, van Rujiven eventually succumbed to complications of her autoimmune disease. While the exact nature of her autoimmune condition is unknown, some have speculated that she suffered from autoimmune encephalitis, vasculitis, idiopathic thrombocytopenic purpura (ITP), lupus, or one of the many other autoimmune conditions which can cause internal bleeding.

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Van Rujiven won the gold medal for the 500-metre short track skating championship in 2019 in Bulgaria, becoming the first woman from the Netherlands to do so.

Fans and fellow athletes alike took to social media to express their sadness about her passing. “What terrible news we’ve just received. The loss will be felt in the sports world,” Dutch national coach Jeroen Otter said.

On behalf of Autoimmune Warrior, I’d like to send our condolences to Lara’s family. Her story demonstrates that autoimmune disease really has no bounds, and can affect even the strongest among us in the prime of their life. Rest in peace, Lara – you’ve made the Netherlands proud!

Video: Living with Autoimmune Diseases

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!

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Toddler’s Strep Throat Triggers Neurological Autoimmune Disease

Nate Kenoe, pictured above, developed a frightening autoimmune disease after strep throat

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.