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.

Top News in Autoimmunity – Week of Feb. 20, 2019

Lupus Strongly Linked to Imbalances in Gut Microbiome

Scientists at the NYU School of Medicine have discovered that systemic lupus erythematosus (SLE) is strongly linked to imbalances in the body’s gut microbiome.

The study showed that 61 women diagnosed with lupus had five times more Ruminococcus gnavus gut bacteria compared to 17 women who were healthy and did not have lupus. The study also showed that the abnormal levels of gut bacteria appeared to positively correlate with lupus ‘flares’, which are instances when lupus symptoms, such as joint pain, skin rashes, and kidney dysfuntion, increase dramatically.

Dr. Gregg Silverman, immunologist and one of the lead researchers in the study, commented, “Our study strongly suggests that in some patients bacterial imbalances may be driving lupus and its associated disease flares.”

Dr. Silverman also stated that the study may give way to new treatments for the disease, such as probiotics, fecal transplants, or dietary regimens that prevent the growth of the Ruminococcus gnavus gut bacteria. The study also discusses the role of ‘leaky gut’ in triggering the body’s autoimmune reaction.

To read more about the study, click here.

Immunology ‘Boot Camp’ Emphasizes the Role of Chronic Stress in Autoimmune Disease

Leonard Calabrese, Vice Chairman of rheumatic and immunologic disease at the Cleveland Clinic, emphasized the role of chronic stress in the development of autoimmune diseases during an immunology ‘boot camp’.

During his speech, Calabrese cited data that chronic stress compromised the body’s surveillance of pathogens. As a result, modern stressors, such as PTSD, major depression, and the stress associated with being a caregiver, which are chronic in nature, may trigger the pathogenesis of autoimmune disease. This is in contrast to acute stress, which comes in response to immediate dangers, ‘like our ancestors encountering a saber-toothed tiger’, states Calabrese.

The link between chronic stress and autoimmunity has given way to the development a several new therapies. For example, parasympathetic and vagal nerve stimulation are now in development to treat pain-related and autoimmune conditions, such as Rheumatoid Arthritis (RA) and fibromyalgia.

To read more about this research, click here.

Interested in reading more? See last week’s top news in autoimmunity here.

Top News in Autoimmunity – Week of Feb. 13, 2019

Benefit Event Organized for New York Woman with Scleroderma

A benefit event has been organized by the friends of Krislyn Manwaring, a 25-year old woman with Scleroderma living in Erin, NY.

Scleroderma is an autoimmune condition that causes the body’s soft tissue to harden. Manwaring, who is now on oxygen, is in need of a stem cell transplant. However, her health insurance won’t pay for it.

The benefit event will raise funds to go towards Manwaring’s transplant procedure. According to the event’s Facebook page, over 200 attendees have already RSVP’d for the event.

Young Woman Shares Journey with Autoimmune Encephalitis

Tori Calaunan, a young woman from Las Vegas, shares her journey with anti-NMDA receptor encephalitis with the Autoimmune Encephalitis Alliance.

While in nursing school, Calaunan felt some weakness in her right leg, but brushed it off as nothing serious. As the weakness continued to worsen, she also experienced confusion and dizziness. She passed a neuro test and MRI, however, and doctors told her that everything was fine.

She eventually checked into the ER, and stayed there for a month before transferring to a hospital in California, where she finally received her diagnosis of Autoimmune Encephalitis.

Family of Young Man with Rare Autoimmune Disease Outraged Over Drug Price Hike

Will Schuller, from Overland Park, Kansas, was 18 when he began experiencing extreme weakness. An avid runner, he was pulled out of high school when he struggled to walk down the hall, and stopped being able to go up the stairs.

He was eventually diagnosed with Lambert-Eaton Myasthenic Syndrome (LEMS), a chronic autoimmune disorder than affects muscle strength. LEMS is reported among 3,000 people in the US, and can dramatically impact one’s quality of life.

Schuller was prescribed a drug called 3,4-DAP, which made him feel better instantly. The drug was free as a result of an FDA program called ‘compassionate use’. The drug’s manufacturing rights, however, were sold to a company called Catalyst, which renamed the drug Firdapse, and raised the price to $375,000/year for the medication.

Schuller’s family decried the extreme price hike, stating that if it hadn’t been for this medication, their son would certainly be in a wheelchair. Senator Bernie Sanders of Vermont called the price increase a ‘fleecing of American taxpayers’.

Schuller is now a senior studying mechanical engineering at the University of Tulsa. Read more about his story here.

Interested in reading more? See last week’s top news in autoimmunity here.

Top News in Autoimmunity – Week of Feb. 6, 2019

Early Onset Primary Sjögren’s Syndrome May Carry a Worse Prognosis

French researchers have discovered that patients diagnosed with early onset Primary Sjögren’s Syndrome may carry a worse prognosis over the course of the disease. Early onset is defined as a diagnosis before age 35.

The study, reported in Rheumatology, states that early onset of this autoimmune disease was found to be associated with a higher frequency of:

  • Salivary gland enlargement
  • Lymph node enlargement
  • Bleeding underneath the skin
  • Liver involvement
  • ANA (antinuclear antibodies, especially anti-SSA and anti-SSB antibodies)
  • Positive Rheumatoid Factor levels
  • Low C3 and C4 complement protein levels
  • Increased levels of immunoglobulin antibodies in the bloodstream

Furthermore, researchers also acknowledged that those with an early onset of the disease showed a worsening progression in their symptoms, whereas those with a later onset showed significant improvement.

Read more about this ground-breaking study here.

’90 Day Fiancé’ Star Ashley Marston to Undergo Additional Surgery Following Kidney Failure

Ashley Marston, star on TLC’s hit reality TV series ’90 Day Fiancé’, recently revealed that she is undergoing additional surgery following a health scare.

Although she did not reveal the nature of her impending surgical procedure, Marston did reveal that she has an autoimmune condition called lupus. Lupus is a disease in which the body’s own immune system attacks its vital organs. In Marston’s case, she suffers from lupus nephritis, which causes inflammation in the kidneys.

After being found unresponsive in her home last month, she was rushed to the hospital and treated for kidney failure. Her upcoming surgery is speculated to be related to this recent hospitalization.

Fans are wishing Marston the best with her surgery and recovery. Read more about her shocking story here.

Interested in more #autoimmunewarrior news? Visit my last news post, here!

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.