Celebrities like Selena Gomez have been diagnosed with lupus, a chronic autoimmune disease that occurs when the body’s immune system attacks its own tissues and organs.
Zeenit Jacobs
Systemic lupus erythematosus (SLE), the most common type of lupus, is a complex and chronic autoimmune disease (lifelong) that many in South Africa know little about.
When a foreign and threatening speck enters or develops in the body, the immune system kicks into high-gear and eliminates the threat.
But what happens when one’s own immune system becomes hostile, perceiving healthy cells as a potential hazard and thereafter attacking organs such as the skin, brain, kidney, lungs - even the joints and blood vessels? This is lupus - Latin for “wolf”, or as Sam Baker from Kera News relates in an article “A Cruel Mystery”.
Lupus is not at all contagious, it is the result of genetics and environmental factors.
Women however make up about nine out of ten diagnoses, ages between 15 to 44. Men can also develop lupus, however, positive lupus cases are significantly higher in women than men. According to the CDC “Women of colour (African-American) are three times more likely to get lupus than white women. Lupus is also more common in Hispanic, Asian, and Native American and Alaska Native women. African-American and Hispanic women usually get lupus at a younger age and have more severe symptoms, including kidney problems, than women of other groups.
“African-American women with lupus also have more problems with seizures, strokes and dangerous swelling of the heart. Hispanic women with lupus also have more heart problems than women of other groups. Researchers think that genes play a role in how lupus affects minority women.”
Making a diagnosis of lupus is never easy, according to the South African Rheumatism and Arthritis Association.
“One of the most essential elements in diagnosing lupus is the patient’s account of their symptoms. If after a thorough physical examination and review of these symptoms the doctor suspects lupus, you will need to do a series of blood tests to confirm the presence of the disease. The most important blood test is known as antinuclear antibody or ANA. This test measures the presence of autoantibodies to the nucleus or ‘command centre’ of our body cells. If you test positive for ANA you are more likely to have lupus.
“However, you can test positive and not have the condition. Therefore, if you have positive ANA, you may need to do other more specific tests to prove the diagnosis. These blood tests include antibodies to double stranded DNA (anti-dsDNA) and anti-Smith (Sm). At this stage, you should be under the care of a rheumatologist, a doctor specialising in lupus.”
In South Africa, corticosteroids such as prednisone, cortisone and dexamethasone are commonly used as immunosuppressants to treat lupus.
When the disease is extremely active, otherwise known as a flare-up, sufferers will be put on a high dosage in order to suppress an overactive immune system. Another drug a rheumatologist will prescribe is chloroquine, but doctors may exercise caution here as chloroquine side-effects are harmful, especially to the kidneys if and when used long term.
Sufferers of lupus nephritis (lupus of the kidney) especially have to exercise caution, while under the watchful eye of an experienced rheumatologist.
Chemotherapy is another option as well and is used for the treatment of lupus. However, extended corticosteroid usage will result in sufferers of lupus developing long-term health complications such as fluid retention, moon face, osteoporosis, elevated blood pressure, thin skin, and bruising to name a few. Since the development and registration of Belimumab (known as Benlysta) in the United States 11 years ago, lupus sufferers in South Africa have seen no such treatment since the South African Health Products Regulatory Authority (SAHPRA) has failed to register Benlysta in South Africa as a treatment for lupus. Benlysta is the first and only approved drug for both SLE and LN (lupus nephritis), the latter being a more severe form of the illness.
The drug itself reduces the sufferers' dependency on steroid usage by targeting specific cells.
According to an article by Health24, “South Africans have been fighting hard for life saving treatment such as Benlysta to be registered”.
In the article, Ms Van der Walt (Lupus Foundation of South Africa) is quoted as having said: “As a private organisation, we do as much as possible to create awareness, but our government needs to get involved and realise that lupus is a huge problem that needs to be addressed. The correct medication should also be registered and made available in the country.” Belimumab (Benlysta) has since been approved in Europe, US and Japan in 2019, and China and Brazil in 2020.
For more support on matters related to lupus, SLE and LN (lupus nephritis), visit: www.lupusfoundation.co.za or Lupus Foundation of South Africa (WhatsApp): 082 564 7803
Jacobs is a poet, and a lecturer in Film Studies, Post Production, and Digital Media in Cape Town. She also writes on a wide range of issues including health.
Cape Times
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