The Sunday News
Roselyn Kapungu, Health Matters
Today, I was going to write about Lupus, in contribution to efforts around the world to raise awareness of the disease in the month of May — Lupus Awareness Month. However, I decided to write about Autoimmune Diseases more broadly.
While May is Lupus Awareness Month and 10 May World Lupus Day, May 8 is World Ankylosing Spondylitis Day, May 12 is Fibromyalgia Awareness Day, 20 May is World Autoimmune/Auto-inflammatory Arthritis Day, and May 25 is the World Thyroid Day.
On these days, people around the world hold events and raise awareness on these little-known, but debilitating chronic autoimmune diseases — to encourage more investment in medical research, knowledge and access to treatment and improved patient diagnosis.
According to the American Autoimmune and Related Diseases Association (AARDA), there are over 100 known autoimmune diseases. While this number might seem large enough to spur urgent action and significant focus on autoimmune diseases, still, little is known about them, there is no cure, and many people struggle to get a diagnosis.
Autoimmune diseases are often difficult to diagnose and treat, and patients visit multiple doctors and specialists over the course of several years before the right treatment can begin. When I was diagnosed with Systemic Lupus Erythematosus (Lupus) in 2014, I had not heard of the disease before and it took visits to several specialists to receive a diagnosis.
In interacting with people with autoimmune diseases since, I have learned that the process of diagnosis is very long for most — sometimes taking years, and that some patients who have been seeking a diagnosis for an extended period have had their symptoms dismissed and have progressively worsened due to lack of the right treatment.
So what is an autoimmune disease?
Autoimmune diseases occur when the body’s immune system mistakenly attacks normal, healthy tissue. When the immune system is functioning normally, it makes proteins called antibodies that protect and fight against viruses and bacteria. Autoimmune antibodies, however, mistakenly target and damage the body’s normal tissue, causing inflammation and damage to the body’s organs.
Different autoimmune diseases affect the body differently, however, many share similar symptoms, such as fatigue, joint pain and swelling, skin problems, abdominal pain or digestive issues, recurring fever and others. It is therefore difficult to diagnose autoimmune diseases as symptoms are non-specific and there is no one test that will provide a clear basis for diagnosis.
Systemic lupus erythematosus (SLE, or just lupus) affects different organs and tissues of the body (heart, kidneys, lungs, joints, and central nervous system) and may also be characterised by rashes and sensitivity to sunlight.
Ankylosing spondylitis is a type of arthritis that causes inflammation in certain parts of the spine, causing stiffness in the joints and spine and in some cases, can cause bones in the spine to fuse together.
Fibromyalgia is characterised by widespread musculoskeletal pain and tenderness throughout the body, fatigue, difficulty sleeping, and memory issues, among others.
Rheumatoid arthritis involves chronic inflammation of the lining of the joints, which leads to pain and swelling, typically in the hands and feet.
Autoimmune thyroid disorders occur when the immune system attacks the thyroid gland. When the affected thyroid makes more (hyperthyroidism) or less (hypothyroidism) of the thyroid hormone, which regulates body temperature, heart rate, weight gain or weight loss, a person may experience digestive issues, fatigue, trouble breathing, muscle and joint aches, among others.
The path to diagnosis
A combination of a review of symptoms, laboratory tests and medical history, provide medical professionals basis to diagnose autoimmune diseases. Autoimmunity can be indicated from blood tests that look for the presence of auto-antibodies. Tests for inflammation and organ function, for example, of kidneys, can also help to detect the presence of an autoimmune disease, and organ damage.
It is critical that when patients exhibit signs and symptoms of autoimmune disease, medical professionals conduct the appropriate testing to aid in quick diagnosis. For this to happen, they need to be acquainted with the basic symptoms of autoimmune diseases as well as the antibody tests supporting diagnosis.
Tests such as the Anti-Nuclear Antibody test (ANA), which may indicate autoimmunity in general, and more specific tests that check for the presence of anti-nuclear antibodies that are specific to certain diseases are critical. Increased awareness and knowledge of autoimmune symptoms and testing will help shorten the path to diagnosis.
Why does a proper diagnosis matter?
Simply because it saves lives — delayed diagnosis means delayed treatment. When someone gets a diagnosis, they can begin to get proper treatment, they know more about the disease and have more accurate information about how to manage it and care for themselves. They can seek the right care and seek out community support.
About the author
Roselyn Kapungu has been living with Lupus since 2014 and is actively engaged in raising awareness on autoimmune diseases. Together with other patients, she leads patient and caregiver support groups for autoimmune diseases in Zimbabwe.
The information provided in this article does not constitute professional medical advice or a basis for diagnosis. Please seek professional medical assistance if you suspect you have an autoimmune disease.
