Thursday

Researchers identify important factors for regulating the body’s immune response

INDIANAPOLIS—Researchers at Indiana University School of Medicine are learning more about how special regulatory T cells can impact the immune system’s response and how those cells could be manipulated for potential treatments for food allergies and autoimmune diseases.

regulating the body’s immune response

In a study recently published in Science Immunology, researchers focused on regulatory T cells, or Treg cells, that regulate immune responses in the body and keep the immune system in order while fighting pathogens. In some cases, the immune system becomes overly responsive, leading to autoimmune diseases, such as Type 1 diabetes or lupus, food allergies or other issues. Researchers were able to identify the differences in isoforms that control Treg cells and how that affects the body’s immune function.

“There is a particular gene that controls this regulatory group of T cells, which controls immune response,” said Baohua Zhou, PhD, lead author of the study and associate professor of pediatrics for IU School of Medicine Department of Pediatrics. “Treg cells can help maintain the right balance to help the immune system not respond too strongly or too weakly.”

SEE FULL ARTICLE

Wednesday

Autoimmune Disorders Care Through Research and Results: The Mayo Clinic Way

The 3-M Approach 
On top of the research being conducted, the neuroimmunology laboratory has adopted a new model of care Pittock calls the “Mayo Clinic 3-M” approach. 

Sean J. Pittock, MD, is the director of the Mayo Clinic Center for MS and Autoimmune Neurology.

The first M stands for “Maximize reversibility.” Here, patients are given large doses of immunotherapy over a short period of time, with maximum reversibility measured through phenotype-specific evaluations. Pittock gave several examples of patients, saying, “If you come in with epilepsy, we count your seizures, or we do epilepsy monitoring. We give you your therapy, we measure, and then we get a sense of that big treatment trial." 

The second M is "Maintaining maximum reversibility." Once a patient has reached a point where they have shown progress with their treatment regimen, it becomes a question of maintenance because patients cannot be given steroids in perpetuity, Pittock explained. The next step is to select an immunotherapy that spares agents such like steroids and other choices like intravenous immunoglobulin, and use other drugs including rituximab, methotrexate, and in other cases, other drugs, such as IL-6 inhibitors like satralizumab. 
 
The third M is "Minimum dose of immunotherapy" to lower risk of adverse effects while maintaining the maximum reversibility. Patients on immunotherapy may experience a range of these, from flu-like symptoms such as fever, chills, weakness, nausea or vomiting, fatigue, headache, or trouble breathing, to other adverse effects including swelling and weight gain, heart palpitations, diarrhea, organ inflammation, and infection. 

 "What do we still need to work on? We discussed biomarkers and the immunopathology, but we still need to work on the treatment part," Zekeridou said. "The NMO example is a perfect example, but the thing the NMO trials has taught us is that we cannot do it alone. These trials were multicentered around the world. We’re dealing with rare diseases, so we need this kind of collaboration. We also need to do a better job of advocating for our patients until we have FDA-approved drugs. This is something we see in our clinic every day, where patients will not get insurance for specific treatments, even though they do have autoimmune encephalitis."

Monday

Improving our understanding of inflammation

Enzymes linked with immune cell activity could hold key to better understanding inflammation.


Findings show promise for developing potential new anti-inflammatory drugs and treatments for autoimmune diseases.

By Adrianna MacPherson University of Alberta, Canada.

Chris Cairo and his research team found that a group of enzymes called neuraminidases could offer clues to understanding inflammation and eventually finding new ways of treating it. 

The findings show promise for developing potential inflammatory therapeutics, and could be useful in treating diseases, explains Cairo, a professor in the Department of Chemistry. For example, in an autoimmune disorder where too many immune cells are being recruited to a particular area, an enzyme with a subtly anti-inflammatory effect may help turn down the intensity of that immune response while not completely eradicating the person’s immune system.

Tuesday

Scleroderma Awareness Month

Scleroderma Awareness Month is observed in June every year. 

National Scleroderma Awareness Month

Scleroderma is a chronic autoimmune connective tissue disease in which the body produces excess collagen. This causes hardening and thickening of the skin and internal organs. 

Scleroderma has no known cause or cure. Diagnosing it is difficult because its symptoms are similar to other diseases. 

There are two main types of scleroderma. Diffuse scleroderma results in the hardening of the skin, affecting internal organs like the heart, kidneys, and lungs. Limited scleroderma is less likely to affect internal organs, and the skin hardening is not as severe.

Symptoms of scleroderma according to Johns Hopkins Medicine may include:

  • Thickening and swelling of the fingers
  • Pale fingers that may become numb and tingle when exposed to cold or stress, known as Raynaud's phenomenon
  • Joint pain
  • Taut, shiny, darker skin on large areas, which can cause problems with movement
  • Limited mobility or immobile fingers, wrists or elbows because of the thickening of the skin

Causes

Researchers have identified variations in several genes that may influence the risk of developing systemic scleroderma. The most commonly associated genes belong to a family of genes called the human leukocyte antigen (HLA) complex.

Affected Populations

Systemic scleroderma affects between 38 and 341 individuals per million throughout the world (prevalence) and develops in 8 to 56 individuals per million each year (incidence). It is more common in populations from southern Europe, North America and Australia, and less common in populations from northern Europe and Japan. The disease most often starts to manifest in the fifth decade of life (age of onset). Although it most commonly occurs in women, men tend to have more severe disease. (NORD - National Organization for Rare Disorders)

Complications according to Mayo Clinic

Scleroderma complications range from mild to severe and can affect the:

  • Fingertips. In systemic sclerosis, Raynaud's phenomenon can become so severe that the restricted blood flow permanently damages the tissue at the fingertips, causing pits or skin sores. In some cases, the tissue on the fingertips may die.
  • Lungs. Scarring of lung tissue can impact your ability to breathe and tolerance for exercise. You may also develop high blood pressure in the arteries to your lungs.
  • Kidneys. A serious kidney complication (scleroderma renal crisis) involves a sudden increase in blood pressure and rapid kidney failure. Prompt treatment of this condition is important to preserve kidney function.
  • Heart. Scarring of heart tissue increases your risk of abnormal heartbeats and congestive heart failure. Scleroderma can also cause inflammation of the membranous sac surrounding your heart.
  • Teeth. Severe tightening of facial skin can cause your mouth to become smaller and narrower, which may make it hard to brush your teeth or to even have them professionally cleaned. People who have scleroderma often don't produce normal amounts of saliva, so the risk of dental decay increases even more.
  • Digestive system. Digestive problems associated with scleroderma can lead to heartburn and difficulty swallowing. It can also cause bouts of cramps, bloating, constipation or diarrhea. Some people who have scleroderma may also have problems absorbing nutrients due to overgrowth of bacteria in the intestine.
  • Joints. The skin over joints can become so tight that it restricts joint flexibility and movement, particularly in the hands.

Find out more about Scleroderma

World Scleroderma Foundation

Scleroderma Research Foundation

National Scleroderma Association, USA

Scleroderma & Raynaud’s UK 

The Awareness colour is teal

Get the Tshirt


See all the Health Awareness Days at Autoimmune Disease List

Wednesday

The benefits of crafting for people with autoimmune conditions

There are many reasons why crafting is beneficial for people with autoimmune disease and in fact all chronic illnesses. Here I uncover some of the research which confirms what many crafters feel when they do their favorite pastime whether it is drawing, pottery, baking, scrapbooking, quilting, rock painting or whatever craft takes their fancy. 

The benefits of crafting for people with autoimmune conditions

Crafting for many people is an enjoyable or relaxing experience and it may be associated with a freedom of expression and a sense of achievement.

Crafting is good for your mental health. Art therapists have known this for years. Their whole field is based upon the benefits of any form of art being beneficial in so many ways. A wide variety of studies have been done now to provide an understanding of these benefits. Some of the results have proven that:

It can be a distraction from pain.

It can decrease anxiety, stress, and mood disturbances which are often felt by people with chronic conditions.

It can improve well-being and quality of life.

It can activate the reward pathways in the brain providing a sense of satisfaction.

RESEARCH INTO THE BENEFITS OF CRAFTING

A US university study even measured 39 participants' cortisol levels to monitor their stress from a session of creative crafting like collage and found a significant lowering of cortisol levels which means they were less stressed.

One studyTrusted Source found that people who engaged in arts and crafts, such as music, painting, drawing, textile crafts, and creative writing experienced lower levels of mental distress. They also experienced higher levels of mental functioning and life satisfaction.

The findings of this study illustrate how creative craft hobbies such as quilting can be a meaningful vehicle for enhancing wellbeing. This study sets the foundation for further research into creativity, creative hobbies, and hobbies in general. A range of cognitive, emotional, and social benefits were uncovered that participants attributed to quilting that could be seen by all crafts.

2018 study shows that crafting is calming, promotes successful aging, and has long-term social and cultural benefits. Researchers found four factors common in their older crafting community: (1) identity, (2) spirituality, (3) calming and (4) mastery/recognition from others led to less decline in everyday functioning and independence among older adults.

A study into the simple act of doodling proved that it aided concentration, improved visuomotor learning, and decreased boredom. Ways of maintaining attention to task are also important in the context of depressive ruminations and worry.

Many people, with autoimmune conditions, have found that they now have reduced skills such as fine motor hand skills or eye problems and they may need to change or modify their hobbies. I personally use to do fine and detailed etching in metal but have changed to coloring due to decreased hand strength. I still enjoy having an activity that I can do that provides me with a sense of creativity and distraction from my symptoms. A friend was telling me she use to do pottery but now due to limited space and the inability to drive to the local kiln to have her pots fired, she has swapped to polymer clay which can do at home. 

MAKING CRAFTING EASIER

Pastel or charcoal drawing using larger crayons may be easier when you have lost dexterity in your hands. 

Collage creations with torn paper and glue sticks rather than using scissors.

Create art, as simple as dots, on pre-cut cards and envelope sets. The same can be done on blank postcards. 

A table easel may make painting or drawing more accessible but it is a matter of personal preference.

Large crayons and triangular colored pencils designed for easy grip by children may help some people with dexterity or strength issues.

Some people like painting on material rather than paper. 


QUESTIONS ABOUT CRAFTING FOR YOU

Are you someone who loves crafting and feel that they gain great benefits in having a hobby or passion that you enjoy? It would be wonderful if you could tell us what hobby you enjoy and a bit about it in the comments. Thank you.

Are you someone that has always been a crafter and has had to modify the way they craft or the type of crafts they do? We would love to hear from you too. 

SOURCES MENTIONED:

The benefits of crafting for people with autoimmune conditions


Tuesday

Vitamin D and marine omega 3 and autoimmune disease

Research from 2021 finds Vitamin D supplementation for five years taken with, or without, Omega 3 fatty acid may help reduce autoimmune disease.

Vitamin D and marine omega 3 and autoimmune disease

In the randomized controlled trial  25,871 adults with autoimmune diseases, including rheumatoid arthritis, polymyalgia rheumatica, autoimmune thyroid disease, and psoriasis were divided into two groups. the first group was given Vitamin D and some received placebos. The second group was given fish oil and some received placebos. Both groups were monitored for just over five years. Vitamin D (2000 IU/day) or matched placebo, and omega 3 fatty acids (1000 mg/day) or matched placebo.

Autoimmune disease activity was reduced by 22% in those who took the increased levels of Vitamin D with or without fish oil. And those that only took fish oil supplements still saw a disease decline of 15%.

The study was done in the USA at a variety of participating hospitals and led by Dr. Karen Costenbader, MD, MPH, Lupus Foundation of America Medical-Scientific Advisory Council.

RESULTS:

This study of more than 25 000 older adults in the US provides evidence that daily supplementation with 2000 IU/day vitamin D or a combination of vitamin D and omega 3 fatty acids for five years reduces autoimmune disease incidence, with more pronounced effects found after two years of supplementation. Autoimmune diseases are a group of heterogeneous conditions with similar underlying pathogenetic mechanisms and together are associated with considerable morbidity and mortality. The clinical importance of these findings is high because these are well tolerated, non-toxic supplements, and other effective treatments to reduce the incidence of autoimmune diseases are lacking. Additionally, we saw consistent results across autoimmune diseases and increasing effects with time.

See the study



Vitamin D and marine omega 3 and autoimmune disease


Thursday

Brain Fog and Celiac Disease

Brain Fog and Celiac Disease

An online survey indicates that brain fog and reduced cognitive function is real for many people with celiac disease. The most common words used by respondents to describe the symptoms were "difficulty concentrating," "forgetfulness," and "grogginess." While I do not have celiac disease I do experience these same symptoms from eating gluten so I was interested to share here what the survey discovered. 

This survey suggests that gluten-induced neurocognitive impairment (GINI) is common and may be severe in both individuals with CD and NCGS. Cognitive impairment and decline in physical functioning may be similar to that occurring in other illnesses, such as lupus. Clinical follow-up with both individuals with CD and NCGS should include assessment of GINI symptoms. Further research is warranted, including the development of a patient-reported outcome measure including neurocognitive effects of gluten exposure.

Goals: 

This study aimed to understand the neurocognitive symptoms associated with gluten exposure in individuals with self-reported celiac disease (CD) and nonceliac gluten sensitivity (NCGS).

Background: 

While gluten-induced neurocognitive impairment (GINI; eg, “celiac fog” or “brain fog”) is commonly described by individuals with CD and NCGS, there are little data regarding the prevalence and symptoms associated with these experiences.

Study: 

A 9-question online survey was accessed by 1396 individuals (1143 with CD; 253 with NCGS). Forced choice and free-response questions were asked of participants to obtain a description of neurocognitive symptoms experienced after gluten ingestion. Free-response answers were coded using a coding structure developed based on the Health-Related Quality of Life Instrument.

Results: 

The majority of survey participants (89% of CD and 95% of NCGS) reported having GINI symptoms. When describing symptoms, the most common word descriptors for both groups were difficulty concentrating, forgetfulness, and grogginess. Timing of symptoms, including onset and symptom peak, were similar across the 2 groups. Coding of free responses found the most common references were to cognitive, physical, psychological, and overall quality of life impacts.

My take on this study:

From reading this study I realise that what I have is probably nonceliac gluten sensitivity also called NCGS. I am not sure how this is diagnosed but I have mostly eaten gluten free for 26 years now. Sometimes there is a slip up when eating out or at a friend's house and very quickly I see the effects of the gluten. This is usually the next day with extreme brain fog which manifests in not being able to concentrate or take in information. As the survy found this does affect quality of life as you cannot function as you normally would on these days as you cannot even do your normal work. 


ORIGINAL ARTICLE: Gluten-induced Neurocognitive Impairment: Results of a Nationwide Study

Edwards George, Jessica B. PhD; Aideyan, Babatunde MA; Yates, Kayla BS; Voorhees, Kristin N. MA; O’Flynn, Jennifer PhD; Sweet, Kristen PhD; Avery, Kate MPH; Ehrlich, Alan MD; Bast, Alice BS; Leffler, Daniel A. MD,  MSJournal of Clinical Gastroenterology: May 28, 2021
doi: 10.1097/MCG.0000000000001561

Brain Fog and Celiac Disease

Monday

A promising path for future treatments to stop progressive multiple sclerosis

future treatments to stop progressive multiple sclerosis

Researchers at the National Institutes of Health, Johns Hopkins University, and others have published results of studies that map out the activity of genes, molecules, cells, and their interactions in specific types of multiple sclerosis (MS) brain lesions thought to contribute to progressive disability. The findings point to a possible informative new way to efficiently test the potential of therapies to stop nerve degeneration, and they identify culprits involved in tissue damage that might be targeted by new therapies in the future.

Tuesday

What can you eat on the elimination diet?

 Many people ask me what I eat on a daily basis when living with food reactions? So today I am answering that question in the hope that it can help many others understand how to simplify this process and find out what they can eat. 

What can you eat on the elimination diet?
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