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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American Family to Immigrate to Canada After Type 1 Diabetes Diagnosis

The Reseburgs have applied to immigrate to Canada as a result of their daughter’s medical diagnosis. Photo courtesy of the Canadian Broadcasting Corporation (CBC).

Amanda Reseburg and her husband of Janesville, Wisconsin, have applied to immigrate to Nova Scotia, a province in Atlantic Canada. While Reseburg has always admired the region’s coastal views, the beautiful scenery is not the reason for her family’s desire to move.

Reseburg’s nine-year-old daughter, Molly, was diagnosed with Type 1 diabetes, an autoimmune condition in which the body’s own immune system destroys insulin-producing cells, called islets, in the pancreas. Consequently, the body produces little to no insulin, an important hormone that enables glucose to enter cells and produce energy. Symptoms of the condition can include fatigue and weakness, blurred vision, unintended weight loss, extreme hunger, increased thirst and frequent urination, among other complications.

The family is hoping that by moving to the Canadian province, they will receive better insurance coverage and more affordable insulin. Reseburg says her daughter takes six to 10 needles a day of long-acting and short-acting insulin. She is also using a continuous glucose monitoring system, which monitors her blood sugar levels and must be replaced every 10 days.

Reseburg says they have been fortunate thus far- their family has medical coverage through her husband’s employment. However, given the current state of the economy and how closely medical insurance is tied to employment in the United States, she wonders what would happen if he were to lose his job.

Nine-year-old Molly Reseburg was diagnosed with Type 1 diabetes, an autoimmune disease impacting her insulin levels. Photo courtesy of the Canadian Broadcasting Corporation (CBC).

Another consideration is that once their daughter becomes an adult, she may no longer be eligible to be on their insurance coverage. Reseburg said, “I don’t want to tell my kids, ‘Go find a good office job.’ I want them to be able to do what they want to do, and not have to worry about insurance.”

The affordability of insulin is another concern. While she has never had to go across the border to buy insulin, she understands why people do it. “I don’t see America getting on board [affordable insulin] any time soon, so that’s why we’re looking to move,” she explained.

Reseburg has also been frustrated with the lack of consumer choice with her daughter’s medication. Several months ago, her insurance company informed her that they would no longer be covering the insulin her daughter currently takes, and would be switching her to a new type of insulin instead. “We don’t get any say in that whatsoever. They decide what insulin they will allow us to have,” she lamented.

This is particularly concerning due to the fact that her daughter Molly also suffers from a chromosomal condition called Turner syndrome, which impacts the effectiveness of the insulin she takes. And, not only was the type of insulin changed, but the insurance company is covering $75 less, resulting in the family having to pay even more out of pocket for this necessary treatment.

The family has retained an immigration lawyer to help them with their Canadian immigration application. On top of attorney fees, the immigration fees cost several thousand dollars, plus extensive paperwork detailing how the family will be able to adapt to their new country and how they plan to contribute to the economy. The mountain of paperwork is worth it, however, since the family says that if their application is successful, their daughter’s insulin will be covered and she’ll no longer be at the mercy of their insurance company.

While it usually takes about two years to immigrate to Canada, the COVID-19 situation could draw out the process even longer. Nevertheless, the family is hopeful that their plan will pan out. “We’ll get their eventually,” Reseburg said.

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Is This Illness Related to COVID-19 Autoimmune?

Healthcare professionals are grappling with the effects of pediatric multisystem inflammatory syndrome (MICS), a complication of COVID-19 in children

Across the world, disturbing reports are coming through detailing a new complication thought to be related to COVID-19 that is affecting children with the virus. The illness, called pediatric multisystem inflammatory syndrome, or MICS for short, causes the immune system to overreact, leading to dangerously high levels of inflammation throughout the body. It impacts the body’s major organs, including the heart, liver, and kidneys, among other parts of the body.

Juliet Daly, a 12-year old girl from Louisiana, was diagnosed with both COVID-19 and MICS after going through cardiac arrest. Thankfully, she was airlifted to a children’s hospital, where she was put on a ventilator until she could breath on her own and her heart and other organs had recovered.

Juliet Daly was diagnosed with COVID-19 and pediatric multisystem inflammatory syndrome after being admitted to the hospital. Image courtesy of CNN.

Pediatric multisystem inflammatory sundrome has been compared to Kawasaki disease, an inflammatory condition primarily found in children under age five that impacts the heart’s coronary arteries. Kawsaki disease can lead to complications like artery enlargement, aneurysms, issues with the lymph nodes, skin, and the lining of the nose, throat and mouth. Some experts hypothesize that the coronavirus could be a trigger for Kawasaki disease. A recent study done in Bergamo, Italy found that the incidence of a ‘severe, Kawasaki-like disease’ increased 30-fold after the virus broke out in the region, further supporting this theory.

Pediatric multisystem inflammatory syndrome also bears the hallmarks of a cytokine storm, a phenomenon in which the body’s immune system overreacts to the virus and mounts a harmful inflammatory response in the body.

This raises the question, is MICS autoimmune in nature? While little is known about the condition, Dr. Randall Williams, Director of the Missouri Department of Health and Senior Services, said during a recent press conference that the condition is an “autoimmune reaction“, and that “it’s basically where your body reacts to an antigen and starts attacking itself.”

The relationship between viruses and autoimmune disease has been studied in the past. For example, studies have found a link between the Epstein-Barr virus (EBV) and the pathogenesis of a number of autoimmune diseases including lupus, multiple sclerosis, rheumatoid arthritis, juvenile idiopathic arthritis, inflammatory bowel disease, type 1 diabetes, and celiac disease.

Though there isn’t a cure for MICS, it’s treated by giving patients steroid and intravenous medications commonly issued to patients with an autoimmune disease, in an effort to decrease damaging inflammation.

While the coronavirus has proven to be less common and less deadly in children than adults, two young children and a teen with COVID-19 who showed Kawasaki disease symptoms have died in the state of New York. As a result, parents are advised to take precautions and contact their pediatrician or family medicine provider if your child has a fever to determine the best next steps.

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