Living with lupus
Family and friends joined lupus survivors to raise public awareness about the disease.
20 May 2019 | Health
Talaesindano Nangolo; Lupus survivor; Many who suffer from this cannot afford to take all the tests.
Community members staged a march on World Lupus Day commemorated on Friday 10 May to raise public awareness about the disease in Walvis Bay.
Three lupus survivors Jada Uiras, Leila Muxinga and Talaesindano Nangolo, led the walk chanting and waving posters, supported by relatives and friends, through the streets of the harbour town.
The aim of the exercise organised by Jessica Swartbooi was to draw people’s attention to the not so very well-known disease.
The group assembled at the municipality after the march and had a panel discussion about the disease.
Swaartbooi explained that lupus, or Systemic Lupus Erythematosus (SLE), is a long-term autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue.
“Symptoms vary from person to person and may be experienced in a series of waves. Many do not realise they are suffering from lupus and regard the symptoms as a common sicknesses.”
She said diagnosing lupus can be quite challenging.
“There isn’t just one test that can give doctors a yes or no answer. Sometimes it can take months or even years before doctors have all the information needed to make a lupus diagnosis. You will not be able to tell you have lupus without professional assistance. Some of us have been under-diagnosed and misdiagnosed for a long time while some were misdiagnosed for years.”
She listed chest pains when taking deep breaths, fatigue, fever with no actual cause, general discomfort, hair loss, weight loss, mouth sores, sensitivity to sunlight, skin rashes, more specifically what is called the ‘butterfly’ rash, as some of the common symptoms.
Talaesindano Nangolo shared her experience as a lupus sufferer, saying she was misdiagnosed for many years.
“I had so many symptoms and lost count. It was only last year that I got diagnosed with SLE, after many years.”
She also elaborated on the impact the disease had on her personal life.
“As a hard worker, the biggest challenge I faced was the reduction it brought along in my effectiveness and productivity due to fatigue, muscle and joint pain I experienced especially in my lower limbs. I was only able to sit or stand for a short period when carrying out tasks. Standing for a prolonged time resulted in me having to deal with lower back pain.”
Nangolo added that having one’s own immune system fight against you instead of protecting you could affect a person mentally and emotionally.
“No one wants to be chronically sick for years.”
She said due to the many tests that need to be done people who suffer from this disease are experiencing many challenges.
“Many who suffer from this cannot afford to take all the tests. The risk of being underdiagnosed or misdiagnosed is very high. It is difficult for doctors to pinpoint that the sufferer has the disease.”
She appealed to the corporate sector and well-doers to assist with funding tests and the treatment of lupus sufferers.
According to the Lupus Foundation of America 5 million people around the world are affected by the disease and 16 000 new cases of lupus are reported each year.
Facts about lupus
Lupus is not contagious. You cannot “catch” lupus from someone or “give” lupus to someone.
Lupus is not like or related to cancer. Some treatments for lupus may, however, include immunosuppressant drugs that are also used in chemotherapy.
Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive and in lupus the immune system is overactive.
Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.