By Roselyn Kapungu
I was diagnosed with System Lupus Erythematosus (SLE or just Lupus) at the end of 2014. I had visited more than six doctors for different symptoms I had experienced for almost a year, with none of them able to tell me what was wrong. I have since learned that this is the fate of many in their journey to diagnoses of an autoimmune disease.
Lupus is an autoimmune disease. When someone has an autoimmune disease, their immune system (which is supposed to defend the body against viruses and bacteria), accidentally recognises healthy cells as foreign invaders and attacks them. While normally the body’s immune system only reacts to foreign substances and invaders to protect the body, this faulty response in some people (the autoimmune reaction), can cause inflammation and tissue damage, affecting multiple organs and systems in the body. The specific cause of this autoimmunity is unknown. However, researchers have suggested that genetics, diet, infections, and exposure to chemicals might be involved.
At the start of 2014, I had a bad itchy rash on my arms, legs and torso, and the worst headaches I had ever had in my life. I went to the family doctor who prescribed pain medication and some cream for the rash. The headaches didn’t get any better, the rash came and went and came back again. In the coming months I suffered from painful joints and muscles and extreme fatigue – a tiredness that no-one around me could understand. My sister would give me a plate of food, look away for a minute then find me eyes closed and a fist-full of sadza that had failed to reach my mouth. Even then, I visited doctor after doctor with no relief. Soon, my legs, hands and face got swollen, and my hands and feet felt cold and numb – I later learned this happened because the arteries (blood vessels that carry blood from the heart to different parts of the body), were narrow and limited blood circulation to affected areas – an associated condition called Raynaud’s phenomenon. Eventually when my stomach swelled up, I was referred to a gastroenterologist. He, unlike all the doctors before him, connected the dots – he had dealt with patients with Autoimmune diseases before and all the symptoms fit.
Although different autoimmune diseases will have different signs and symptoms, some common ones include: Fatigue, joint pain and swelling, muscle weakness, skin problems (bruises, hyperpigmentation, skin rashes, sun sensitivity), abdominal pain or digestive issues (nausea, vomiting or diarrhoea), fever, mouth and nose sores, shortness of breath / chest tightness and weight changes.
Because these symptoms are unspecific, it makes diagnosis difficult and most people get diagnosed when significant damage has been done to major organs. There are said to be more than 100 autoimmune diseases – some common ones include, celiac disease, Crohn’s disease, inflammatory bowel disease, multiple sclerosis, psoriasis, rheumatoid arthritis, Sjogren’s syndrome, vasculitis and vitiligo.
When the doctor suspects an autoimmune disease, they confirm this through a combination of blood tests, urine tests and a physical examination. Blood tests to diagnose an autoimmune disorder may include auto-antibody tests which look for auto-antibodies in the blood (those antibodies made by the immune system causing it to attack the body’s own cells, tissues and organs). Tests that look for inflammation and organ function are also done as certain autoimmune disorders, such as lupus, can cause damage to internal organs such as the liver, kidneys or heart.
There is currently no cure for autoimmune disorders, and treatment often aims at reducing symptoms and restricting the autoimmune process. The former involves doctors prescribing pain and anti-inflammatory medications to help patients cope with the symptoms of the disease. Restricting autoimmune processes involves the use of immunosuppressants to suppress the immune system. Immunosuppressive medicines such as corticosteroids, help reduce the intensity of damage caused by the autoimmunity. The treatment options may also depend on the specific autoimmune disease and the symptoms manifesting at the time.
Although local statistics are not readily available, there is evidence of a steady rise in the prevalence of autoimmune diseases globally over the last decades. However, many patients still face challenges receiving quick diagnoses, with critical obstacles caused by initial symptoms being unspecific and varied and a relative unfamiliarity of autoimmune conditions by medical practitioners and the public. Delays in diagnosis are particularly concerning as autoimmune diseases can be life-threatening.
This series will delve deeper into the issues surrounding autoimmune diseases to improve the awareness and understanding of these conditions. Stay tuned.
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 support and caregiver support groups for autoimmune diseases in Zimbabwe. The information provided in this article does not constitute professional medical advice or basis for diagnosis. For more information visit Facebook @lupusandautoimmunesupportzim.zw or Instagram @autoimmunesupportzimbabwe