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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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.

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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When your doctor doesn’t believe you

Have you ever complained to your family physician about your symptoms, only to be totally dismissed?

Whether you’ve been diagnosed with an autoimmune disease or not, your ailments may be ignored or written off as ‘not a big deal’ by a health care professional.

This has often happened to me over the course of the last 7+ years of having an autoimmune condition. For example, before I was even diagnosed with Sjögren’s Syndrome, I was told that my symptoms, including joint pain, eye and mouth dryness, recurrent ulcers, yeast infections, and fatigue had a plausible, non-disease related cause, and weren’t really a ‘big deal’ anyway.

Even worse, other health care professionals told me my symptoms were nothing more than a figment of my imagination.

Worse yet, after many unproductive visits to doctors’ offices and labs, with little to no explanation for what could be wrong, I actually started to believe…could I be imagining this?

One family MD, for example, told me my joint pain was probably a result of ‘texting too much’. As a fresh-faced teenager, I probably didn’t look like someone who could be experiencing debilitating joint pain. But that shouldn’t matter. In fact, juvenile rheumatoid arthritis, affecting those 16 years and younger, affects over 50,000 people in the United States alone.

Another time, I needed a referral to see a rheumatologist. The nurse who checked me in asked, “How does someone your age need a rheumatologist? Did you wear high heels too much in high school?” Not only was her questioning intrusive, rude, and uncalled for, it invalidated my experience as a patient with a chronic health condition.

As a result, I became even more reticent to explain my health issues with the people who I should be speaking with the most…health care professionals! And sadly, this is too often the experience for others living with autoimmune or other chronic health conditions.

The Sjgoren’s Syndrome Foundation recently shared a tip on social media, stating, “Remember that just because a symptom can’t be seen easily, it is still important. If you feel that a physician dismisses your Sjögren’s symptoms, help educate them and/or find another physician”. Many commenters responded by lamenting their own experiences with not being taken seriously by their healthcare providers. One woman commented, “My dentist keeps telling me to stop making excuses for my bad teeth”, referring to the fact that Sjögren’s often has a devastating impact on patients’ teeth, despite maintaining a solid oral hygiene routine.

If I had to give one piece of advice for anyone with chronic health problems, diagnosed or not, I would say to never give up. If your physician doesn’t take you seriously, move on. This doesn’t mean that you don’t listen to your doctor’s medical advice; this means that if they tell you it’s ‘all in your head’, or ‘it can’t be that bad, can it?’, and you know they are wrong, then you stand your ground.

Remember, you are the best advocate for your own health! Check out these helpful tips published by WebMD about talking to your doctor.

Top News in Autoimmunity – Week of Dec. 19, 2018

NMO

Edmonton fighter diagnosed with rare disease

Victor Valimaki, a 37-year old professional fighter from Edmonton, Alberta, Canada, was left crippled by a rare autoimmune disorder.

Although Valimaki has fought in over two dozen professional fights, leading him to a successful career as an Ultimate Fighting Championship (UFC) mixed-martial arts fighter, he was recently diagnosed with neuromyelitis optica (NMO), otherwise known as Devic’s disease.

This autoimmune condition affects the body’s optic nerves, spinal cord and brain. For Valimaki, the disease caused him to lose his vision, speech, and ability to walk. Although he has since regained his sight, he is still struggling with the other consequences of the disorder.

Read his full story and watch the video on CTV News Edmonton.

Italian biotech company raises 17M€ to fund gene therapies for autoimmune diseases

An Italian biotechnology company named Altheia raised over 17 million euros this week to fund gene therapies that could potentially treat many incurable autoimmune diseases.

The company’s technology, which uses gene therapy to engineer bone marrow stem cells to express a molecule called PD-L1 that inactivates the immune system’s T cells. In other words, the molecule released will ‘hit the breaks’ on the body’s immune system, avoiding an immune system attack on healthy tissue.

Paolo Rizzardi, the company’s CEO, has stated that he expects clinical trials for autoimmune conditions such as multiple sclerosis and type 1 diabetes to begin in 2021.

Read more about this exciting new development on LABIOTECH.eu.

 

 

 

Top News in Autoimmunity – Week of Dec. 12, 2018

Man left paralyzed from the nose down by rare autoimmune disorder

David Braham, a 40-year old man from the United Kingdom, came down with a bad case of food poisoning, which he believes was triggered by eating chicken curry. A few days later, he was in the hospital being put into an induced coma.

It turns out, the food poisoning had caused him to develop a rare autoimmune condition called Guillain-Barre Syndrome. This disorder causes the body’s immune system to attack its own nerves, leaving the patient paralyzed.

Braham is re-learning how to do basic tasks, such as walking, washing himself and brushing his teeth, and is happy that he has been able to return home to his family. Read more about his harrowing story here.

Purdue University developing new treatment options for autoimmune diseases

Purdue University researchers have developed a series of molecules to help provide symptom relief to those with autoimmune conditions.

Mark Cushman, a distinguished professor of medicinal chemistry at the university, was the lead researcher in the study. His research team found that the molecules are more effective than pharmaceuticals currently on the market at affecting cell signaling and inhibiting autoimmune reactions. They have also shown to produce less side effects than conventional treatments.

Read more about this exciting discovery here.

MSU student shares her story with Alopecia

Payton Bland, a freshman student at Minot State University (MSU) in North Dakota, shares her story of acceptance and confidence while living with Alopecia.

Alopecia is an autoimmune condition that causes the body to attack its own hair follicles. The result can be extensive hair loss. In the case of Alopecia Universalis, the patient loses 100% of the hair on their body.

Oftentimes, those affected by this disorder suffer from anxiety. Payton, however, is undeterred by her Alopecia. Her bald head might cause her to stand out on campus, but she also stands out because of her upbeat personality and positive attitude.

Payton has spoken with young girls living with the condition, to inspire and empower them that it’s nothing to be ashamed about. She credits her family and faith in helping her stay confident in who she is. Watch her heartening interview here.

Top News in Autoimmunity – Week of Dec. 5, 2018

Sjogren’s non-profit seeks applicants for research grants

The Sjogren’s Syndrome Foundation (SSF) is now accepting applications for research grants. Two distinct awards are being offered: the SSF Pilot Research Award for $25,000 and the SSF High Impact Research Award for $75,000. To view more details and apply, see the SSF website.

Trump administration proposes access barriers to drugs critical to autoimmune patients health

The American Autoimmune Related Diseases Association (AARDA) reports that the Trump administration has proposed a Medicare rule that allows for step therapy and prior authorization restrictions. The AARDA states that such a rule would interfere with the patient-physician relationship, and can result in delayed treatment, increased disease activity, loss of function, and potentially irreversible disease progression for Medicare beneficiaries. Read more here.

Sharing the Journey series provides tips on explaining lupus

The Lupus Foundation of America has published a blog series Sharing the Journey to highlight the perspectives and personal experiences of those who struggle with lupus each day. In the series’ latest installment, contributors describe how they explain lupus to family, friends, co-workers, and others. Read their compelling stories here.

MS Society of Canada launches Vitamin D recommendations for MS

The Multiple Sclerosis (MS) Society of Canada has released a report detailing Vitamin D recommendations for those living with MS for at-risk populations.

Vitamin D, dubbed the ‘sunshine vitamin’, is produced by our skin through sun exposure, but can also come from other sources such as food (eggs, fortified dairy products, and fish) and supplements. The Society has long funded research on the relationship between Vitamin D levels and MS. The recommendations have been summarized into two reports; one for researchers and healthcare professionals, and another for laypersons. Read more under the Society’s research news.