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.

3 BioTech Companies You Can Invest In to Fund Autoimmune Disease Research

At Autoimmune Warrior, we believe that scientific research and development holds the key to unlocking new, innovative treatments and ultimately, a cure for autoimmune disease. In today’s blog post, we’ll explore three different biotechnology companies that are pioneering research about autoimmune diseases.

Why should companies research autoimmune diseases?

According to the American Autoimmune Diseases & Related Disorders Association (AARDA), there are over 100 different types of autoimmune diseases affecting 50 million people in the US alone. This demonstrates that autoimmune diseases are one of the most prevalent conditions nationwide. Furthermore, the AARDA reports that autoimmunity is one of the top 10 leading causes for death among American women. These figures show the high impact that medical research could have on autoimmune patients.

There is, of course, a financial incentive for biotech companies as well. A Research & Markets report indicated that as of 2017, the global autoimmune disease therapeutics market was estimated to be worth over US$109 billion. This figure was projected to grow to US$153 billion by 2025. Part of this growth has been attributed to the rise in autoimmune diseases among the general population and specific groups; although it’s been argued that medical professionals are becoming more aware of autoimmune conditions, and therefore, are simply getting better at diagnosing patients.

How can I help fund research & development?

If you or someone you love suffers from an autoimmune condition, you’ll know how important it is to find effective treatment options. As a result, you may consider investing your hard-earned dollars in companies that are pioneering autoimmune disease research. Below are three companies that I have personally researched that are contributing to this cause.

1. Landos Biopharma

Landos Biopharma is a Virginia-based company started by former Virginia Tech inflammation & immunology professor Josep Bassaganya-Riera, PhD. Landos is considered to be clinical-stage biopharmaceutical company focused on the discovery and development of oral therapeutics for patients with autoimmune diseases. In particular, the company is developing therapeutics for those with autoimmune diseases of the gastrointestinal tract, such as ulcerative colitis (UC) and Crohn’s disease.

Landos, which was founded in 2017, is a publicly-listed company on the NASDAQ stock exchange under the ticker symbol LABP. As of writing, the stock sits at just above US$12 per share.

2. UCB

UCB is a Brussels, Belgium-based multinational company, with a long history of research and development in the area of immunology. Some of the company’s autoimmune disease research areas include: rheumatoid arthritis, psoriasis, Crohn’s disease, lupus, and myasthenia gravis (MG). The company actively works with clinics worldwide to recruit for clinical studies with autoimmune patients; some of the studies they are actively recruiting for at the time of writing (June 2021) include patients with hidradenitis suppurativa, lupus, psoriasis and myasthenia gravis.

UCB is a 90-year-old company, and is publicly listed on the EBR stock exchange under the ticker symbol UCB. As of writing, the stock sits at just above 85 euros per share.

3. Abbvie

Abbvie is a Chicago-based multinational company that was spun off from Abbott Laboratories. Abbvie has been striving to advance the standard of care in rheumatology for more than 20 years. The company says that they are focused on developing therapeutics for patients with chronic diseases, which is said to account for 75 percent of all healthcare costs. Some of the company’s autoimmune research areas include: rheumatoid arthritis, systemic lupus erythematosus, psoriasis and multiple sclerosis. The company has already developed a number of well-known anti-inflammatory treatments, including HUMIRA (adalimumab).

Abbvie was spun-off in 2013, and is a publicly-listed company on the NYSE under the ticker symbol ABBV. As of writing, the stock sits at just above US$114 per share.

Would you consider investing in these biotech companies? Why or why not? Let us know in the comments below!

Disclaimer: This blog post is not intended to provide financial advice, but to raise awareness about companies conducting research & development towards advancing autoimmune disease therapeutics. Always consult with your physician before beginning a new treatment plan.

Woman with Rare Autoimmune Disease Undergoes High-Risk Treatment

Shelley Clark-Collins and her partner Mark Doyle have travelled to Ottawa, Ontario so that she can receive an innovative treatment for her rare autoimmune disease (Photo: CBC News)

Shelley Clark-Collins, a 56-year-old woman from Saint John, New Brunswick, Canada, is looking to undergo a high-risk procedure to treat her rare autoimmune disease.

Clark-Collins lives with dermatomyositis, an autoimmune condition in which her body’s own immune system mistakenly attacks her healthy cells, causing inflammatory, painful and degenerative changes to her skin and muscles. According to Johns Hopkins Medicine, symptoms of the disease include rashes and spotting on the skin, swelling, stiff joints, muscle weakness and aches, difficulty swallowing, voice changes, fatigue, fever, and weight loss. Dermatomyositis can also cause other autoimmune and connective disease conditions, like lupus, and increase the risk of developing cancer.

Dermatomyositis is extremely rare, affecting fewer than 10 in 1 million people, according to an estimate from the National Organization for Rare Disorders (NORD). The disease most often occurs in adults ages 40-60, and juvenile dermatomyositis occurs most commonly in children and youth between the ages of 5 and 15.

Because of its rarity, Clark-Collins had a difficult time getting diagnosed. As a hairdresser, she suddenly found that she was so weak, she could no longer hold up a blow dryer or stand for long periods of time. She was falling down frequently, couldn’t get out of the bathtub, or lift her bed sheets. She was later diagnosed with multiple sclerosis (MS) after a neurologist found a lesion in her brain.

“But what he was treating me with [for MS] wasn’t working,” explained Clark-Collins. After seeing numerous specialists, she was diagnosed with “everything but the kitchen sink,” she recalls, including cancer, arthritis, and Grave’s disease. A dermatologist even told her that she should see a psychiatrist for Empty Nest Syndrome as a result of her kids moving out.

Despite these setbacks, Clark-Collins was eventually correctly diagnosed with dermatomyositis through blood work and muscle biopsies. Since then, the disease has affected her health and wellbeing substantially. Prior to developing the disease, she was an avid marathon runner and outdoor enthusiast, enjoying kayaking, rock climbing, and skiing. Now, she says that walking to her car is a feat. She sleeps in a chair because getting in and out of bed is too difficult with her muscle weakness. She has difficulty swallowing and talking, and has suffered irreparable damage to her heart and lungs. She’s had a stroke, blood clots, and a life-threatening sepsis infection.

Dr. Harold Atkins is pioneering a new treatment designed to help patients with dermatomyositis, a rare autoimmune disease.

However, Clark-Collins has found hope in a new procedure being pioneered by Ottawa, Ontario-based Dr. Harold Atkins. The innovative procedure is a combination of intense chemotherapy and a blood stem cell transplant. The chemotherapy will destroy her diseased immune system, and the stem cells from her bone marrow will be removed, purified and re-injected into her body. It’s a risky and aggressive procedure that aims to reset her immune system – but there are no guarantees that it will work. With the COVID-19 pandemic still raging, re-setting her immune system also leaves her extremely vulnerable to contagious diseases, meaning she could easily die should she catch the virus.

Despite the risks, Clark-Collins says she’s “very excited,” and is looking forward to the possibility of reclaiming her life. As a mother of two adult children, she says “it’s been hard on [my kids] to watch me decline like that.”

Plus, she’s running out of options. She has developed a resistance to several of her medications already, she can’t take large doses of steroids for much longer, and her opioid painkiller can cause an addiction. She also goes to the hospital once a week for plasmapheresis, a procedure in which her plasma (the liquid part of the blood) is separated from her blood cells, and is replaced with new plasma. But this treatment isn’t guaranteed to work forever.

With this new treatment, the hope is that her dermatomyositis will go into remission. Clark-Collins says she dreams of being able to regain her independence, start running again, and just to be able to hug her children without excruciating pain.

“Just maybe [I’ll] get a little big of my life back,” she said hopefully.

To learn more about Clark-Collins’ battle with dermatomyositis, read the full story on CBC News.