Father Battles Kelch-11 Encephalitis, a Rare Autoimmune Disorder

Eric Walters works with his physical therapist to regain strength and mobility, after being diagnosed with a rare autoimmune disease (Image courtesy of USA Today).

Eric Walters was a fit, 45-year-old husband and father, living his best life in Stevens Point, Wisconsin. An avid mountain biker and ice fisherman who embraced Wisconsin’s chilly weather and loved the outdoors, Walters began experiencing some concerning symptoms in January 2020.

He worked as an electrician, and had many busy days on the job. One day when he woke up to go to work, he found himself extremely dizzy. After two weeks of dizziness, he decided to go to urgent care, thinking that he had an ear infection.

Unfortunately, Walters never made it to the clinic. Instead he passed out on the job, and was transported to the ER. After receiving a steroid injection and told he was suffering from vertigo, he was discharged without further explanation. Doctors at the time didn’t know it, but Walters was suffering from a much more dangerous condition than vertigo.

It turns out that Walters had developed testicular cancer, but even he didn’t know it. His immune system had gone after the cancer and eradicated it, leaving behind a non-cancerous mass of cells. But, even after the cancer was gone, Walters’ immune system went on the hunt for more KLH11, also called Kelch proteins, which are the cells associated with testicular cancer. Because Kelch proteins are also located in the brain stem, his immune system went after his brain as well.

When Walters began experiencing more dizziness, his doctors performed an MRI, revealing a lesion on his brain stem. At the time, his physicians thought he was suffering from multiple sclerosis (MS), a reasonable assumption given that this autoimmune condition also causes scarring lesions on the brain.

Walters was put on a treatment for MS, but continued to experience scary symptoms like double vision, dizziness, and a locking jaw. His facial muscles began to degrade, and just breathing took considerable effort. He received another MRI, which revealed that the single lesion on his brain stem had grown even larger. However, this was inconsistent with typical MS symptoms, which would result in multiple lesions.

At that point, Walters’ medical care team realized that they were dealing with something other than MS. He was then transferred to the Mayo Clinic’s Rochester, New York campus, where a friend of his had received excellent treatment. There he underwent a full battery of new tests, including an ultrasound and CT scan, which revealed the non-cancerous mass indicating that he had had testicular cancer. Combined with his symptoms, Walters was diagnosed with testicular cancer-associated paraneoplastic encephalitis, also known as Kelch-11 encephalitis for short.

Relatively little is known about Kelch-11 disease, which was only discovered by researchers in 2019. It is, however, known to be an autoimmune disease that causes severe neurological symptoms in men diagnosed with testicular cancer, affecting their limb movements, vision, and speech.

With his new diagnosis, Walters’ doctor prescribed him stronger steroids and chemotherapy to tamper down his rogue immune system. He also was inserted with a diaphragmatic pacer, which helps send signals to his lungs to keep breathing, along with a ventilator. Though living with Kelch-11 hasn’t been easy, Walters’ son Sam and wife Mary are what keep him going.

“We’ll become the poster child of Kelch if it means that other people don’t have to go through this,” says his wife Mary Walters. She wants to raise awareness for Kelch-11 disease, so others can get an accurate diagnosis and the treatment they deserve. According to Walters’ physician, Dr. Divyanshu Dubey, there are only 60 known patients who have been identified with this disease in the past few years.

As for Walters, he and his wife have faith that he will recover. “I’m just starting the healing process now,” he said. “Now I really get to fight.”

If you would like to contribute to helping Eric Walters and his family fight this devastating autoimmune disease, his brother has set up a GoFundMe fundraiser with the objective of raising $25,000.

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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