Top News in Autoimmune Disease – May 15, 2019

Type 1 Diabetes Patients Drive to Canada for Affordable Insulin


Lija Greenseid of Minnesota holds up insulin for her 13-year-old daughter that she purchased from Fort Francis, Ontario during an organized caravan ride to Canada. 

Type 1 Diabetes is an autoimmune disease in which the body’s immune system attacks and destroys pancreatic cells, rendering them incapable of producing insulin. Insulin is a hormone that the body needs to get glucose from the bloodstream into its cells. As a result, patients with Type 1 Diabetes rely on prescription insulin in order to survive.

Unfortunately, for the majority of Americans, the cost of life-saving insulin keeps going up year after year. As a result, Quinn Nystrom, from Minnesota, organized a caravan to Canada to fill her prescription for insulin, where it sells for a fraction of the cost.

As reported by the Canadian Broadcasting Corporation (CBC), insulin costs significantly less in Canada, thanks to the Patented Medicine Prices Review Board, which sets limits for the maximum price that can be charged for patented drugs. As a result, a vial of insulin that costs $300 in the US is only $30 in Canada, even when it comes from the same brand.

Many patients who cannot afford their medication will ration their insulin. Unfortunately, as a result of not taking the required minimum dose, patients who ‘ration’ their insulin can die.

That’s what happened to Alec Smith-Holt, a 26-year-old man from Minnesota who died in 2017 when he couldn’t afford $1,300 in insulin, and decided to ration his remaining supply. His body was discovered five days later. His mother, Nicole Smith-Holt, joined the caravan to Canada as a symbolic gesture in memory of her son.

To read more about this story, click here.

Executive Gets Purple Mohawk to Benefit Kid with Autoimmune Disease

Cayden Krueger, a young patient with ITP, poses with John Stevenson, who is supporting his Pump it Up for Platelets campaign.

Cayden Krueger, from Madison, Wisconsin, was diagnosed with thrombocytopenia purpura (ITP) when he was just 6 years old. ITP is an autoimmune disease that causes patients to have too few platelets in their blood, resulting in easy bruising and bleeding. Cayden has been raising awareness about ITP by launching a Pump it Up for Platelets fundraiser and sporting a purple mohawk.

When John Stevenson, a Senior Director of Financial Services at US Cellular, heard about Cayden’s story, he challenged his employees to raise money for the Pump it Up for Platelets fundraiser, and pledged to get a purple mohawk himself if they could meet a $1,000 goal. His team ended up raising $2,000, so Stevenson found himself with a new hairdo, and Cayden even got to make the first cut.

To read more about this story, click here.

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My favorite Autoimmune Disease YouTubers

Zach uses his platform on YouTube to share his story about ankylosing spondylitis

Zach from The Try Guys

Zach is best known for his work as a videographer for media giant BuzzFeed. During his time at Buzzfeed, Zach created a video about his struggle with an autoimmune disease called ankylosing spondylitis which received over 5 million views. In addition to having difficulty getting a diagnosis for his condition, Zach continued to struggle due to incessant back pain even after being diagnosed. He stresses the importance of being proactive with your treatment plan, no matter the severity of your symptoms. Check out his video below!

Zach’s video: I have an Autoimmune Disease

Live | Hope | Lupus

Samantha has been creating advocacy videos on chronic illness for the past 10 years. She created the YouTube channel Live Hope Lupus to create a space where those with chronic illnesses could get information and support. Samantha herself lives with the autoimmune conditions lupus, Sjogren’s Syndrome and autoimmune hemolytic anemia, as well as other related conditions, such as TMJ, costochondritis and Raynaud’s Phenomenon. She encourages others to subscribe to her channel to follow along with her journey. Check out her video below!

Samantha’s video: Lupus 101

Adamimmune

Adam started his YouTube channel two years ago after being inspired to share his story of healing. He has an autoimmune condition called Hidradenitis Suppurativa (HS), which affects hair follicles in the skin. After reaching stage 3 of the disease and experiencing significant pain, Adam implemented the Autoimmune Protocol (AIP) diet and found that his HS symptoms went into remission after three months. He is a big advocate for lifestyle changes in the treatment of autoimmune disease and shares his AIP recipes and grocery hauls on his channel. Check out his video below!

Adam’s video: Hidradenitis Suppurativa: Life Before Remission (My HS Story)

Surviving as Mom

Meredith, who goes by Meri, vlogs about her experience with an autoimmune disease called Sjogren’s Syndrome, which she says makes each day a little more challenging. She is an active stay at home mom with four sons, one of whom has various special needs. Meri’s channel contains many videos about her life as a stay at home mother, in addition to a Sjogren’s Syndrome video series. Check out her video below!

Meri’s video: Day in the Life with Sjogren’s Syndrome

Kalie Mae

Kalie recently started her YouTube channel in the hopes of being able to connect with other chronic illness sufferers. She discusses various autoimmune diseases and related conditions on her channel, including Fibromyalgia, Chronic Fatigue Syndrome, Sjogren’s Syndrome, Ehler’s Danlos Syndrome, Chron’s Disease and more. She is very candid in talking about chronic illness, including discussing the impact of her conditions on her mental health, career and relationships. Check out her video below!

Kalie’s video: Anxiety and Depression Chronic Illness Awareness

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Top News in Autoimmunity – Week of May 1, 2019

Carrie Ann Inaba Opens Up About Struggling with Fibromyalgia and Other Autoimmune Conditions

Carrie Ann Inaba shares emotional Instagram post about her struggles as an #AutoimmuneWarrior

Carrie Ann Inaba, world-famous dancer and judge on the reality TV show Dancing with the Stars, opened up to fans about her struggle living with multiple autoimmune and chronic health conditions, including fibromyalgia, Sjogren’s syndrome, rheumatoid arthritis, spinal stenosis and antiphospholipid syndrome (APL).

Carrie Ann shared that she has come to feel ashamed about her health issues, stating “I feel so much shame when I go through these things, because I want to be what people see. And people see a healthy person, from the outside.” On the positive side, Carrie Ann says that confronting her health issues has helped her to learn about who she is, besides being a “sexy dancer chick”. 

Carrie Ann says that despite the pain and other symptoms that she battles on a daily basis, she credits her improved health to staying active through practicing yoga and pilates, as well as seeking altnerative treatments like Craniosacral therapy, acupuncture and Reiki.

To learn more about her inspiring story, click here.

The Sjogren’s Syndrome Foundation (SSF) launches a new Exploring Sjogren’s video series

Sjogren’s Syndrome Foundation Launches YouTube Video Series

The Sjogren’s Syndrome Foundation (SSF) launched an informative new video series called Exploring Sjogren’s. The videos aim to discuss the complexities of living with the disease and the issues involved with conquering it.

The foundation says that the a new episode will premiere every Monday on their YouTube channel. To learn more about the video series, visit the SSF website by clicking here.

To view the first episode in the series, check out the Exploring Sjogren’s YouTube channel here.

Immune scavenger cells called histiocytes (in green) crowd around muscle fibres (in red), damaging them and causing muscle pain and weakness

Researchers Discover New Autoimmune Disease Causing Muscle Pain and Weakness

Researchers at the Washington University School of Medicine in St. Louis, Missouri have identified a new autoimmune disease that causes muscle pain and weakness.

Dr. Alan Pestronk, who leads the university’s Neuromuscular Disease Clinic and works as a professor of neurology, immunology and pathology, says that they have only observed four cases of the disease over the past 22 years.

Dr. Pestronk first observed the disease in 1996, when looking at microscope slides of muscle from a patient experiencing muscle pain and weakness. He noticed that immune scavenger cells called histiocytes that normally feed on dead material were crowded around injured muscle fibers.

He and his colleagues then encountered three more similar cases over more than two decades, each time analyzing detailed biopsies of the patients’ muscle tissue. The four cases discovered were enough to name a new autoimmune disease, large-histiocyte-related immune myopathy.

To learn more about the discovery of this autoimmune disease, click here.

Is there a link between diet and autoimmune disease?

About 8 years ago, I saw a powerful TedTalk by Dr. Terry Wahls, called Minding Your Mitochondria.

Dr. Wahls is a physician who was diagnosed with Multiple Sclerosis, a degenerative autoimmune disease affecting the body’s nervous system. After undergoing traditional therapies for the condition, including chemotherapy and usage of a tilt-recline wheelchair, Dr. Wahls studied biochemistry and learned about the nutrients that played a role in maintaining brain health.

After noticing a slow down in the progression of her disease after taking nutritional supplements, she decided to focus her diet on consuming foods that contained these brain-protecting nutrients. Only a year after beginning her new diet, Dr. Wahls was not only out of her wheelchair, but she had just finished her first 18-mile bike tour! She went on to develop a dietary regimen for those with autoimmune conditions, called the Wahls Protocol.

So, this raises the question, does diet play a role in the development of (and fight against) autoimmune disease?

There is evidence to suggest that there is a link between autoimmunity and one’s diet. For example, I recently wrote about a study published by NYU’s School of Medicine, in which researchers found that the autoimmune disease lupus is strongly linked to imbalances in the gut’s microbiome.

Furthermore, the Multiple Sclerosis (MS) Society of Canada also released a report detailing Vitamin D recommendations for MS patients, as a result of studies linking Vitamin D deficiency to the disease. Vitamin D is produced by our skin through sun exposure, but also comes from food sources such as fish, dairy and eggs.

Tara Grant, who has a condition called Hidradenitis Suppurativa (HS), an autoimmune condition of the skin, believes that there is a direct link between autoimmunity and diet, as a result of a concept called leaky gut syndrome.

Leaky gut syndrome, also known as intestinal permeability, occurs when the tight junctions between cells in the body’s digestive tract begin to loosen. This enables substances like bacteria, toxins and undigested food particles to enter your bloodstream. Consequently, your immune system reacts to attack these foreign substances, which leads to the development of inflammation and autoimmune disease.

After implementing a restrictive, dairy-free, gluten-free paleo diet, Tara has found that her HS symptoms have completely gone into remission. She now promotes the paleo lifestle on her blog, PrimalGirl, and even released a book, The Hidden Plague, which talks about her struggle treating HS through traditional means, and her journey to healing.

Now I’d like to hear from you Autoimmune Warriors- has changing your diet impacted your chronic health condition in any way? What changes have you implemented that have worked?

Learn More

To read more about the Wahls Protocol, check out Dr. Wahls’ website, and click here to get her book on Amazon.

To read more about Tara Grant’s journey to being HS-free, click here to get her book on Amazon, and check out her amazing gluten-free dough recipe, here.

April is Sjögren’s Awareness Month

Raise Awareness About Sjögren’s Syndrome by Sharing Your Story

April is Sjögren’s Syndrome awareness month! To raise awareness about this autoimmune disease, the Sjögren’s Syndrome Foundation (SSF) will be posting a daily story about someone affected by the disease on their social media platforms with the hashtag #ThisisSjogren’s. To participate in the campaign, fill out and submit the questionnaire at the following link along with a photo: https://info.sjogrens.org/conquering-sjogrens.

Here’s my questionnaire:

20190316_124525.jpg

Name: Isabel

Current age: 26

Age when diagnosed: 20

City/State: San Diego, California

How would you describe yourself in one word (teacher, graphic designer, stay at home parent): Marketing Coordinator

What are your top three most difficult symptoms to live with: Eye/mouth dryness, joint pain, fatigue

What is your most difficult symptom that people don’t understand: Brain fog – it’s an invisible symptom, and it’s hard to explain

What do you wish people knew about your Sjögren’s: 

That the condition involves the whole body, and it’s more than just eye and mouth dryness (and even those can be destructive symptoms).

What’s your best Sjögren’s tip:
Find a positive outlet in which you can discuss your disease – whether that’s a support group, talking with a loved one or keeping a journal. I write about Sjögren’s on my blog, autoimmunewarrior.org, and use it to connect with others who have the disease.

The Role of Chronic Stress in Autoimmune Disease

Is there a link between chronic stress and autoimmune disease? Can being chronically stressed cause an autoimmune condition?

What the Research Says

A 32-year long study conducted by researchers in Sweden revealed that chronic stress may be the culprit behind many autoimmune conditions, such as lupus and rheumatoid arthritis.

Researchers behind the study analyzed over 100,000 people diagnosed with stress-related disorders, such as acute stress reactions and post-traumatic stress disorder (PTSD), and compared them with their siblings, and with over a million unrelated individuals who did not have stress-related disorders.

The study found that participants who were previously diagnosed with a stress-related disorder developed autoimmune conditions at a higher rate than those who did not have a stress-related disorder.

In addition, the study also found that those who suffered from stress-related disorders were more likely to develop multiple autoimmune diseases (as opposed to just one), and had a higher rate of autoimmune disease the younger that they were.

Impact of Stress on the Immune System

Although this study doesn’t necessarily prove that chronic stress triggers autoimmunity, it is proven that stress can negatively impact your body’s immune system.

For example, when stressed, the hormone-producing glands in your body release adrenaline and cortisol into the bloodstream. This, in turn, activates immune cells, which leads to the production of inflammatory proteins called cytokines. While cytokines play an important role in the body’s immune system, the overproduction of cytokines can result in painful and inflammatory conditions, including autoimmune disease.

How to Combat Stress

To combat stress, Dr. Vedrana Tabor, a Hashimoto’s patient herself, suggests getting a good night’s rest, as sleep has a restorative impact on your body and can help maintain a lower stress level. Reducing alcohol consumption and quitting smoking, as well as improving one’s diet, are important, as malnutrition will amplify the negative effects of stress.

Getting regular exercise can also reduce stress by boosting your body’s production of mood-enhancing neurotransmitters called endorphins. Practicing mindfulness techniques, such as meditation, have also shown to work well for the majority of people.

In addition, the Swedish study referenced above found that in patients with stress-related disorders that were being actively treated using an SSRI (a type of anti-depressant), the increased chance of developing an autoimmune disease was less dramatic, suggesting that seeking treatment for mental health issues could have a protective benefit.

Final Thoughts

Whether you’re going through stress at work, school, home, or other aspects of your life, don’t just accept chronic stress as part of your life—actively take steps to combat it. Doing so can not only protect you from developing an autoimmune disease (or developing more, if you already have one), but also have a huge positive impact on your overall health and well being.

 

If you enjoyed this article, check out my last article, 10 Facts about Systemic Lupus Erythematosus (SLE).

10 Facts About Systemic Lupus Erythematosus (SLE)

According to the Lupus Foundation of America, lupus is a chronic autoimmune disease that can damage the body’s vital organs, skin and joints. Read on to find out 10 facts about this chronic autoimmune condition.

1. It is more common than you think

Lupus affects 5 million people worldwide, and 16,000 new cases are reported every year, reports the Lupus Foundation of America. In the United States alone, lupus is estimated to affect up to 1.5 million people. The exact prevalence of lupus among the general population is hard to determine, however, since the symptoms often mimic those of other disorders. For reasons unknown, lupus has become 10 times more common in industrialized Western countries over the last 50 years.

2. It mostly affects women

According to the U.S. National Library of Medicine, Females develop lupus nine times more often than their male counterparts. It is more common in younger women, peaking during the childbearing years; however, 20 percent of lupus cases occur in people over age 50. Because lupus largely impacts women, sex hormones are thought to play a role in the onset of this complex disease.

3. Your ethnicity may play a role

In the United States, lupus is more common in people of color, including those of African, Asian, Hispanic/Latino, Native American or Pacific Islander decent. In these populations, lupus is known to develop at a younger age and tends to be more severe as well.

4. Skin problems are a telltale sign

One of the characteristic signs of lupus is a red rash across the cheeks and nose bridge, which worsens when exposed to sunlight, called a ‘butterfly rash’ due to its shape. Other skin problems include calcium deposits under the skin, damaged blood vessels in the skin, and tiny red spots called petechiae, which occurs as a result of bleeding under the skin. Ulcers may also occur in the mucosal lining of the skin. To read more about how lupus affects the skin, click here.

5. Heart problems are also common

Pericarditis, an inflammation of the sac-like membrane around the heart, and abnormalities of the heart valves, which control blood flow, can occur in patients with lupus. Heart disease caused by fatty buildup in the blood vessels, called atherosclerosis, is more prevalent in those with lupus than the general population. To read more about how lupus affects the heart, click here.

6. Lupus affects the nervous system too

A lesser known fact about lupus is its impact on the body’s central nervous system. For example, lupus causes damaging inflammation, which may result in peripheral neuropathy, which involves abnormal sensations and weakness in the limbs. Lupus can also cause cognitive impairment, also called ‘brain fog’, which makes it difficult to process, learn and remember information. Seizures and stroke may also occur.

7. It may be genetic

Lupus tends to run in families. However, the exact inheritance pattern is unknown. Certain gene variations can increase or decrease the risk of developing the disease; however, not everyone with the disease will get lupus. Relatives of those with lupus have a 5-13% chance of developing the disease. Sometimes, someone with a family member with lupus may inherit a different, but related, autoimmune disease, such as Sjögren’s Syndrome or Rheumatoid Arthritis (RA).

8. Lupus can impact one’s quality of life

According to research conducted by the Lupus Foundation of America, 65% of lupus patients state that chronic pain is the most difficult part of having the disease. Furthermore, 76% of patients say that the disease has caused them to develop fatigue so severe that they have had to cut back on social activities. A further 89% of patients report that they can no longer work full-time as a result of their disease. Lupus can also cause mental health problems such as anxiety and depression.

9. The prognosis of the disease varies

Patients with lupus often have episodes during which the condition worsens (called ‘exacerbations’ or ‘flares’), followed by periods of remission. However, since lupus does not currently have a cure, it is a life-long condition. Lupus is known to get worse over time, and damage to the body’s vital organs can be life-threatening. This is why it is important to work with a team of medical professionals that understand the disease.

10. There is hope

If you or a loved one has been newly diagnosed with lupus, check out the Lupus Foundation of America’s newly diagnosed webpage. It is full of resources about the disease, including treatment options, financing your care, and tips on how to live a healthy lifestyle with the disease. You can also sign up for their 8-week email series with tips and resources to empower you to learn more about your condition. The foundation also recently released a new research center on their website, Inside Lupus Research, so that you can keep up-to-date on all of the latest scientific reports, disease management and treatment news.

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