World lupus commemoration day was on the 10th of May 2021, this year’s theme; let’s make Lupus visible. Lupus is an autoimmune disease, this occurs happens when the immune system attacks tissues of the body, causing inflammation, swelling, pain, and damage. Lupus is a chronic (long-term) disease that can cause inflammation and pain in any part of your body.
No one knows what causes lupus. Anyone can develop lupus. But certain people are at higher risk for lupus; women ages 15 to 44 and a family history of autoimmune disease. Symptoms usually start in early adulthood, anywhere from the teen years into the 30s. People with lupus generally experience flare-ups of symptoms followed by periods of remission. That’s why early symptoms are easy to dismiss.
There are various forms of lupus including;
- Systemic lupus erythematosus (SLE), the most common form of lupus
- Cutaneous lupus, a form of lupus that is limited to the skin
- Drug-induced lupus, a lupus-like disease caused by certain prescription drugs
- Neonatal lupus, a rare condition that affects infants of women who have lupus
Early symptoms can be non-specific and vague, including:
- Fatigue
- Fever
- dry mouth and eyes
- swelling in the lower legs and feet
- high blood pressure
- blood in your urine
- darker urine
- swollen joints
- gastrointestinal problems like heartburn, acid reflux
- having to urinate more frequently at night
- pain in your side
Lupus fatigue is different in that it cannot be relieved by resting, one ‘wakes up tired’ even after 12 hours of sleep. Low-grade fever for no apparent reason that comes on and off. A low-grade fever could be a symptom of inflammation, infection, or imminent flare-up.
Thinning hair is often one of the first symptoms of lupus. Hair loss is the result of inflammation of the skin and scalp. Some people with lupus lose hair by the clump. Lupus can cause hair to feel brittle, break easily, and look a bit ragged, earning it the name “lupus hair.”
One of the most visible symptoms of lupus is a butterfly-shaped rash that appears over the bridge of the nose and on both cheeks. About 50 percent of people with lupus have this rash. It can occur suddenly or appear after exposure to sunlight. Sometimes the rash appears just before a flare-up. Lupus can also cause non-itchy lesions in other areas of the body. Many people with lupus are sensitive to the sun, or even to artificial lighting. Rarely, lupus can cause hives.
These conditions can all lead to chest pain when you try to breathe in. Over time, breathing issues from lupus can shrink lung size. Ongoing chest pain and shortness of breath characterize this condition. It’s sometimes causes vanishing or shrinking lung syndrome. The diaphragmatic muscles are so weak thus affecting breahing.
People with lupus can develop a kidney inflammation called nephritis. Inflammation makes it harder for the kidneys to filter toxins and waste from the blood. According to the Lupus Foundation of America, nephritis usually begins within five years of the start of lupus.
It is not uncommon for people with lupus to develop autoimmune thyroid disease. The thyroid helps control your body’s metabolism. A poorly functioning thyroid can affect vital organs like your brain, heart, kidneys, and liver. It can also result in weight gain or weight loss.
Inflammation can cause pain, stiffness, and visible swelling in your joints, particularly in the morning. It may be mild at first and gradually become more obvious. If you have lupus, you may experience dry mouth. Your eyes may feel gritty and dry, too. That’s because some people with lupus develop Sjogren’s disease, another autoimmune disorder. Sjogren’s causes the glands responsible for tears and saliva to malfunction, and lymphocytes (disease fighting cells of the immune system) can accumulate in the glands. In some cases, women with lupus and Sjogren’s may also experience dryness of the vagina and skin.
The condition takes a toll on the individual and how they relate with society. Quality of life is affected as one is not able to execute their daily chores/duties effectively due to the limitations created by fatigue and aggravated by the muscle and joint pain. Lupus patients can be labelled ‘lazy’.
I have had the opportunity to join a lupus support group discuss the challenges that lupus presents in the patients’ lives. Women in our culture are expected to undertake heavy chores more so at family gatherings. Lupus makes them incapacitated to do ‘makoti’ duties which stigmatises the patient. Conjugal rights may not be satisfied causing strain of marriages. At times even carrying ones groceries is a task that one needs assistance with. As with a lot of long term illness depression may develop more so during a flare up event. The rash may be disfiguring and one can be mistaken for a skin lightening attempt gone wrong; please don’t stare.
The cost of health care is high; monthly medication, consultation with various specialist, physicians psychiatrist for the depression, physiotherapist and chiropractors for the aches, dermatologist just to name a few. The regular laboratory and radiological investigations add more strain financially.
Lupus can affect anyone, let us be supportive of those suffering from, even in the workplace. Till next week stay well and remember to maintain the COVID-19 prevention protocol.
#MakeLupusVisible.
