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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What is Spoon Theory?

The term ‘spoon theory’ was coined by Long Island, New York based blogger Christine Miserandino, a chronic illness advocate living with systemic lupus erythmatosus (SLE). The theory states that those with chronic illness only have so many ‘spoons’, or units of energy, available to them in order to accomplish their daily tasks. This is in contrast to healthy, able-bodied individuals, who have a much greater supply of ‘spoons’ that allow them to achieve all that they need to get done throughout the day.

Christine first created the term after she tried explaining to a friend what it was like to live with the autoimmune disease lupus. After having some difficulty explaining how she lived with chronic pain, chronic fatigue, and challenging symptoms, she realized that it would be easier to explain her disease if she had a visual aid. This is when she handed her friend 12 spoons to represent units of energy, and took each spoon away as her friend described every activity that she had to do throughout the day, including routine items like doing the groceries, cooking a meal, showering, and even getting out of bed. Her friend quickly realized that she didn’t have enough spoons to complete all the necessary tasks in her daily life, and had to make difficult choices, like whether to eat dinner or run an errand instead.

Christine later decided to write a post on her blog But You Don’t Look Sick, to describe her interaction with her friend and the creation of the ‘spoon theory’. This also lead to the development of the term ‘spoonie’, to describe someone with a chronic illness who has to make difficult choices throughout their daily lives on what they will and won’t be able to do.

I think that spoon theory is an excellent way to describe what it’s like to live with an autoimmune disease to any healthy, able-bodied person who may not otherwise understand what you’re going through. This is especially true if you have an invisible illness (when you don’t have any obvious outward symptoms), and others perceive you as lazy, inconsistent, or having poor time management skills.

One of the most difficult aspects of having limited ‘spoons’ is that some friends or family members may not understand why you can’t do certain things, like go out for a fun night on the town on a Friday after work, or why you can’t run a 5k with them, or be a bridesmaid at their week-long destination wedding. These are tough decisions that any spoonie or autoimmune warrior has to make, but, they’re just part of the reality of living with a chronic illness.

On a more positive note, sometimes, have limited ‘spoons’ does force us to choose the things that really matter in life. Maybe you don’t want to go to your Great Aunt’s potluck, but if you were perfectly healthy, you would have begrudgingly gone, just to be nice. But when you live with chronic pain, fatigue and other symptoms, you don’t have the luxury of being a ‘yes-man’ (or woman). You have to decide what is worth your time and what isn’t.

This sentiment was echoed by Estrella Bibbey in the video, Sjogren’s Syndrome: A Place to Begin, when describing her life with Sjogren’s Syndrome. “This kind of illness makes you slow down, it makes you choose wisely, and it makes you want to conserve your energy for the very best things,” she said. “I don’t live my life just willy-nilly, [like] we’re going to do whatever and just pick up the pieces later. It’s a more controlled experience, but we choose the really good things and we make sure our energies are focused on the really good events. When we commit to going to a birthday party, or some other kind of social event, we commit to it and we are really excited to be there, and we made a space in our lives to be there.”

If you’re a spoonie (like me) and I had to give you one piece of advice, I would say to practice self-care, be kind to yourself, and make sure you’re using your limited spoons wisely.

What do you think of the term ‘spoon theory’? Does it accurately describe your life as an autoimmune warrior? Have you ever had to make a difficult decision about using your ‘spoons’? Comment below and let me know!

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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