We All Need to Better Understand Autoimmune Disease–
Autoimmune is a word I rarely used or heard of 10 years ago. But now I find that many of my friends have at least heard of the word “autoimmune”, or know someone who has an autoimmune problem, or who has actually been diagnosed with an autoimmune disease themselves. What has changed in the last decade? What is really going on with the apparent increase of autoimmune diseases? Why are there so many different autoimmune diseases? Why are women predominantly impacted by autoimmune diseases more than men.
Since I was diagnosed with Graves’ Disease in January 2017, I’ve been on a journey to get more educated so I can understand what this is, what caused it, and what I can do to help myself and to help others who are on a similar challenging journey. Here’s what I’ve learned that is important to understand, whether you have an autoimmune condition or not. We are facing a crisis-level epidemic and we have to pull together collectively to stop it!
Immunity is Our Body’s Defense System
Starting with the basics, we need immunity to survive. The immune system is our body’s auto-responder self-protector defense system. It is like a police force that constantly patrols every organ and tissue in our body to keep invaders away. Our immune system is always on alert ready to attack and fight off any invading microorganisms or toxins that could harm or kill us, such as viruses, bacteria, or parasites. It’s a smart, highly tuned, targeted defense system that knows what to attack and what not to attack: it can distinguish “self” from “non-self”. What is so amazing is how smart it is, knowing what to precisely attack with the endless invaders it has to deal with every day, around the clock.
How Our Immune System Works
The number of potential invaders in our body system continues to grow all the time, given more and more toxins in the environment. So, we need a healthy immune system to live.There are two main parts of the immune system: innate and adaptive immune systems. They complement each other and work together to defend against the constant onslaught of pathogens or harmful substances our bodies continually face. The innate immune system works mostly at the level of immune cells called “scavenger cells” or “killer cells.” These immune cells mostly fight against bacterial infections.The adaptive immune system develops antibodies or an immune response to antigens of invader microorganisms. It is a smart, highly tuned, immune response that our bodies remember. It is constantly adapting, learning over time, and getting smarter so our bodies can fight off bacteria or viruses that are always changing and continually invading.
Our Immune System is Activated by Invading Antigens
For our immune system to work properly, the immune system must recognize the difference between our own healthy “self” cells and harmful, invading “non-self” cells. Our immune system is activated by many “non-self” substances called antigens. For example, protein cells on the surfaces of bacteria, fungi and viruses are all antigens. The immune system recognizes antigens and produces antibodies that destroy the substances containing antigens. When the immune system recognizes an antigen, a complex, highly regulated physiological immune response system of different groups of cells work together to form alliances and fight off the pathogen. Then our immune system stores “memories” so it will be ready to rapidly defend against those pathogen germs in the future.
As long as our body’s defense system is running smoothly, we do not notice our powerful and smart immune system working 24 hours a day. But if our immune system is compromised, or the invading microorganism is especially aggressive, then illness can occur.
Immune System Breakdown and Link to Autoimmune Disease
How does our immune system break down? It starts at the cellular level. The cells of the immune system include the white blood cells, including lymphocytes (T-cells, B-cells and NK cells), neutrophils and monocytes/macrophages, and also proteins. The major proteins of the immune system are primarily signaling proteins (cytokines) and antibodies. The immune system joins forces with the circulatory system for transportation of cells and with the lymphatic system for production of white blood cells.
The big problem that ignites a series of events starts when our immune system loses its ability to recognize the difference between healthy “self” sells and invading “non-self” cells. The adaptive immune cells go “haywire” and start attacking healthy “self” cells. This maladaptive process is called “cross-reactivity”. Self-tolerance is broken when adaptive immune cells recognize host cells as alien “non-self” cell and initiate an attack on our own host cells. B-cells produce antibodies targeting host cells and activated T cells recognize self as antigen. Our immune system gets mixed up, sends the wrong signals and starts attacking the organs it is meant to protect. That’s when an autoimmune disease occurs.
There Are Over 80 Autoimmune Diseases
There are over 80 autoimmune diseases that all start with the same event. Harmless immunity in the body turns to pathogenic autoimmune disease when self-recognition and self-tolerance breaks down. Often a seemingly harmless viral infection (including a “bad cold”) can trigger autoimmunity.
Autoimmune diseases can affect almost any part of the body including the brain, nerves, muscles, skin, eyes, joints, heart, lungs, kidneys, the digestive tract, blood vessels, and endocrine (hormone) glands. The classic sign of an autoimmune disease is inflammation, featuring redness, low grade fever, pain and swelling. Other symptoms include fatigue, trouble concentrating, numbness, hair loss, skin problems, and stomach problems. How autoimmune disease causes symptoms and is diagnosed depends on what part of the body is targeted. Since autoimmune diseases can strike virtually any part of the body, and the symptoms vary widely, they often go undetected. Proper diagnosis and treatment can often be long and difficult.
Organ Specific vs. Non-Organ Specific Autoimmune Disorders
Autoimmune diseases are usually classified into organ-specific disorders or non-organ specific or systemic disorders. The organs and tissues most commonly affected include the endocrine glands, such as thyroid, islet (insulin-producing) cells of the pancreas, and adrenal glands; components of the blood such as red blood cells, and connective tissues such as skin, muscles and joints.
In organ specific disorders, the autoimmune disease is directed mostly against one organ such as the thyroid, with Hashimoto’s Disease (hypothyroidism) and Graves’ Disease (hyperthyroidism). But patients can have several organ-specific diseases at the same time. In non-organ specific or systemic disorders, autoimmune activity is widely spread throughout the body. This includes Rheumatoid Arthritis and Systemic Lupus Erythematosus, along with other conditions.
Common Types of Autoimmune Diseases
Organ Specific Types of Autoimmune Disorders:
- Addison’s disease (adrenal)
- Autoimmune hepatitis (liver)
- Celiac disease (GI tract)
- Crohn’s disease (GI tract)
- Graves’ disease (overactive thyroid)
- Glomerulonephritis (kidneys)
- Guillain-Barré syndrome (central nervous system)
- Hashimoto’s thyroiditis (lowered thyroid function)
- Multiple sclerosis (brain and spinal cord)
- Pernicious anemia (GI tract—malabsorption of Vitamin B12 needed for red blood cell production)
- Psoriasis/Psoriatic arthritis (skin/joints)
- Raynaud’s phenomenon (fingers, toes, nose, ears)
- Type 1 Diabetes mellitus (pancreas islet cells)
- Ulcerative colitis (GI tract)
- Vitiligo (skin, also eyes, mouth and nose)
Systemic Types of Autoimmune Diseases:
- Lupus [Systemic Lupus Erythematosus] (skin, joints, kidneys, heart, brain, red blood cells, other)
- Polymyalgia Rheumatica (large muscle groups)
- Rheumatoid arthritis (joints, less commonly lung, skin)
- Scleroderma (skin, intestine, less commonly lung)
- Sjogren’s syndrome (salivary glands, tear glands and joints)
Autoimmune Diseases with Highest Incidence and Medical Burden
The major autoimmune diseases with the highest incidence or highest medical burden include:
Graves’ Disease- An autoimmune thyroid disease which causes the thyroid gland to overproduce thyroid hormones (hyperthyroidism).
Rheumatoid Arthritis- A chronic inflammatory disorder affecting many joints, including those in the hands and feet.
Hashimotos’s Thyroiditis- An autoimmune thyroid disease which causes the thyroid gland to reduce its production of thyroid hormones (hypothyroidism).
Vitiligo- A chronic condition that causes white patches on your skin and can also affect your eyes, mouth, and nose.
Type 1 Diabetes mellitus
Type 1 Diabetes mellitus- A chronic condition in which the pancreas produces little or no insulin.
Pernicious Anemia- Anemia is a condition in which the body does not have enough healthy red blood cells that occurs when the intestines cannot properly absorb Vitamin B12.
Multiple Sclerosis- A disease in which the immune system eats away at the protective covering of nerves—the myelin sheath that also helps greatly speed up the conduction of nerve impulses and information flow in the brain.
Glomerulonephritis- A chronic condition with inflammation of the membrane tissue in the kidney that serves as a filter, extracting wastes and excessive water from blood.
Systemic Lupus Erythematosus (SLE)
Systemic Lupus Erythematosus (SLE)- An autoimmune disease that can affect almost any organ or system in the body, including blood vessels, muscles, joints, digestive tract, lungs, kidneys, heart and the central nervous system.
Sjogren Syndrome- An immune system disorder characterized by dry eyes and dry mouth.
Celiac Disease- An immune reaction to eating gluten, a protein found in wheat, barley, and rye. People with Celiac disease can’t eat gluten because it will damage their small intestine.
Psoriasis- An autoimmune disease that causes itchy, sore patches of think red skin with silvery scales.
Psoriatic Arthritis- Approximately one third of people with psoriasis develop psoriatic arthritis which causes pain, stiffness and swelling of the joints.
Inflammatory Bowel Disease
Inflammatory Bowel Disease- A group of chronic disorders characterized by swollen and damaged tissues in the digestive tract.
Addison’s Disease- An autoimmune disease characterized by chronic and insufficient functioning of the outer layer of the adrenal gland, with reduced production of cortisol and often also aldosterone.
Autoimmune Diseases- A Growing Epidemic
Autoimmune diseases are a major threat to the health of all Americans. Collectively, autoimmune diseases are among the most prevalent diseases in the U.S. affecting over 23 million Americans. According to the American Autoimmune Related Diseases Association (AARDA), 50 million people are dealing with a chronic condition caused by autoimmunity. According to the National Institutes of Health (NIH), there are more than 80 autoimmune diseases that have been identified and more than 100 serious, chronic illnesses are caused by autoimmune disease. They are a special threat to women. According to the AARDA, about 75 percent of all autoimmune cases occur in women, particularly in those who have had children. Autoimmune diseases are among the top 10 leading causes of death in women in all age groups up to age 65.
What Is Causing the Autoimmune Epidemic?
There are three major factors or triggers that lead to the manifestation of autoimmune disease: Genetic Predisposition, Endocrine Effect, Environmental/Lifestyle Factors.
Autoimmune diseases have a strong genetic component and tend to run in families. There is also a clustering effect. If you have one disease, you are at greater risk for developing a second or a third autoimmune disease. With advances in gene sequencing tools, researchers have a better understanding of what genes may contribute to specific diseases. Thanks to the human genome project, scientists now know a great deal about the genes that make people more susceptible to develop an autoimmune disease. One risk factor gene is a predominant type of gene that is important in preventing the successful transplantation of tissues like skin or organs from one person to another. The other risk factor genes are immunoregulatory genes that are involved in the process of regulating the immune response system.
The predominance of females impacted by autoimmune disease points to an endocrine effect. Women undergo three major endocrinological transition periods: puberty, pregnancy, and menopause. The endocrine transitions have a major impact on the innate and adaptive immune systems due to the interaction between the hormonal changes, innate and adaptive immune system as well as pro and anti-inflammatory cytokines and antibodies. Changes in women’s hormone milieu impacts the delicate balance of their innate and adaptive immune system, putting them at greater risk. Research focused on endocrine transitions and their role in autoimmune diseases is getting more attention.
Currently, studies have shown that genetic predisposition accounts for approximately 30 percent of all autoimmune diseases. The rest, 70 percent, are due to environmental factors, including smoking, exposure to toxic chemicals, an unhealthy diet, disturbances of gut microbiota, and changes to gut lining and permeability (commonly known as leaky gut). Infectionis well known to be a factor that can trigger autoimmune disease. Smoking is a well-known risk factor for Rheumatoid arthritis. Gluten is known to promote Celiac disease. But there is much more interdisciplinary research needed to understand the impact of the environment and lifestyle choices on triggering autoimmune disease.
Burden of Autoimmune Diseases is at a Crisis Point
Autoimmune disease is a major and increasing public health crisis.
Autoimmune disease is a large and growing problem in the United States and worldwide. As a total category, autoimmune disease affects 50 million Americans. It is one of the top ten causes of death in women under age 65 and is the second highest cause of chronic illness and is the top cause of morbidity in women in the United States. Additionally, autoimmune diseases are on the rise around the world, making this poorly understood category of diseases a public health crisis comparable to cancer and heart disease.
Autoimmune disease is a national crisis on women’s health.
The NIH has recognized autoimmune disease as a national health crisis on women’s health given that 75% of the cases affect women at all stages of their lives. The diseases are difficult to diagnose as symptoms vary and can go undetected for years while symptoms increasingly worsen. Delay in diagnosis puts a significant burden on patient quality of life, risk of permanent organ damage and/or risk of major debilitation. Autoimmune disease is a life-long chronic condition with no permanent cure, although patients can control the symptoms. Progression of disease significantly impacts quality of life, ability to participate in the job force and reduces long-term earnings potential. It also has a significant negative impact on the overall family well-being.
Autoimmune disease is a major factor behind the rise in healthcare costs.
Low awareness among the general public and medical practitioners and a compartmentalized approach to managing autoimmune disease based on the organ(s) affected, negatively affects the communication with other doctors and the extended healthcare constituents. This compartmentalization has hampered communication among physicians and scientists interested in autoimmune diseases. A lack of coordinated care and standardized diagnostic tests cause a significant increase in the cost of autoimmune disease as a portion of the total healthcare budget. Unequal funding and suboptimal focus at the NIH on autoimmune diseases have slowed progress. The result is an escalation in the burden of autoimmune disease on patients, society and healthcare costs.
Urgent Need for a Dedicated Focus on Autoimmune Diseases
Increase Awareness, Research, and Patient Advocacy
We need a dedicated comprehensive focus on increasing awareness, research investment and education about autoimmune disease now more than ever. The time for intense focus on autoimmune disease is now. Heart disease and cancer (and most recently kidney disease) have garnered proper focus and investment. Now it is time for autoimmune disease to get the attention it deserves and sorely needs.
Streamline the Autoimmune Diagnosis Process with Coordinated Care Model.
The autoimmune disease diagnosis and treatment puzzle is extremely complex. It often takes years for patients to get a proper diagnosis and the right treatment. It is very complicated to manage autoimmune disease patients because they often need multiple specialists treat their symptoms. We urgently need a new model of coordinated care for autoimmune disease patients to save time, costs, but most importantly to improve health outcomes much faster.
Establish Inter-Disciplinary Autoimmune Disease Centers.
We need a radical change in how the collection of autoimmune diseases are viewed, studied, and managed given their complexity and significant burden on patients and society. Let’s start with recognition that most or all autoimmune diseases are related, and they should be viewed as autoimmune disease versus individual diseases. We know there are common threads unite all autoimmune diseases based on a maladaptive immune response called “cross-reactivity” that is caused by a complex interplay of genetic and environmental risk factors (infectious, chemical, physical, or other). If we focus on autoimmune disease with an interdisciplinary approach and secure the proper funding, we can accelerate scientific discovery to help find a cure for the underlying problem(s) that cause the immune system to break down in the first place.
Collective and Comprehensive Approach Towards Autoimmune Disease
We need comprehensive and collective interdisciplinary approach to help address the autoimmune disease epidemic. We need to build a movement together across patients, scientists, medical researchers, practitioners and service providers, to better serve patient. It’s essential way to stem the rapid growth of autoimmune disease and more importantly find a cure. It starts with a vision and a belief that we can do it. It starts with each one of us taking steps forward to drive change.
Take Small Steps to Ease the Way Forward for One and All
We need big change, but small individual actions by patient themselves can start the wave of change. First and foremost, take care of yourself. Focus on what it takes for you to manage your condition and live your best life day-to-day. Connect with patient advocacy groups to share your journey and find community support. Help spread the word about the autoimmune disease epidemic and help raise funding for patient-driven research so we can find cures and change the lives of future generations to come (possibly your own children and grandchildren!)
Take these 5 steps to create a change movement:
- Learn about autoimmune disease through autoimmune patient resources.
- Share your knowledge and use your voice to spread awareness.
- Take care of yourself. Follow an anti-inflammatory lifestyle to help keep flares down.
- Partner with your best healthcare provider team and stick with your treatment plans.
- Join patient advocacy support groups in whatever format you like. Give and you will receive!
Individually, and collectively we can change the course of the rising autoimmune epidemic. I believe it and am taking action to make change happen! I hope you will join me.
Live Well with Zest!
Written By Bev Hope
Reviewed by Board Certified MD