With proper medication, healthy living and a positive outlook, patients can lead good lives.
There’s a photo on Ziyaad Vaid’s phone in which he’s walking on the Durban beachfront on a bright sunny day. He’s painfully thin in the photo, and is supported on one side by a family member, while his other hand is holding on to a black walking stick.
That photo was taken in 2009. These days Vaid (who is now 28 years old) is a qualified personal trainer who works out diligently and helps his clients to realise their exercise and fitness goals.
It was with a similar sense of enthusiasm that a much younger Vaid travelled to London in December 2005 on a working holiday. It was not to be. He was barely there when he broke out in a rash and started feeling extremely tired, to the extent that he had to return home early in the new year.
“My general practitioner did tests on me on the same night on which I arrived in South Africa. He told me I had lupus the next day, and sent me to a specialist,” he recalls.
According to Farhana Paruk, a Durban-based rheumatologist, lupus is an autoimmune disease without a known cause. “Autoimmune’ refers to the activation of the body’s own immune system, which attacks organs and systems, causing inflammation and damage,” she explains. “The spectrum can range from very mild and self-limiting disease to severe major organ involvement and death.”
She says that common manifestations of lupus include fever, joint pains, skin rashes, hair loss and fatigue. “Major organ involvement can occur [in] kidney and brain, which can lead to kidney failure, strokes, et cetera.”
But, like many others, Vaid didn’t know this when he was diagnosed, and so his initial reaction was blank. “I didn’t know what was wrong with me. When I found out I didn’t really have a reaction – I thought I had something like a flu that goes away, so I wasn’t really shocked. I phoned a doctor friend who was very disappointed when I told her I had lupus, and this took me aback, but I was still positive.”
Severe muscle weakness
Two years later Vaid began experiencing severe muscle weakness, which prompted his doctors to send him for a muscle biopsy. “After that my muscles began deteriorating and I stopped moving around as much as I used to before,” he says. “I stayed in bed a lot, and lost weight. It got to a stage where I couldn’t get out of bed, and I couldn’t get out of a chair. Someone needed to help me, and I had to use crutches.”
This was a significant change in lifestyle for someone who had previously played sport, and was the under-14 KwaZulu-Natal squash champ during his school days. In the end, it was the reminder of who he was that catalysed a change in mind-set for Vaid. He remembers the turning point clearly. “My dad mentioned to a physiotherapist who was treating me that I had been a squash champion and she looked at me and said: ‘Sies, look at you now.’
“It was then that I realised that I was not meant to be in a state of sickness and I could do anything I wanted – until then I suffered from a mental block that made me keep telling myself that I was sick.”
He started consciously forcing himself to get out of bed, and began going to the gym regularly, in addition to regular visits to his physiotherapist, a rheumatologist and a dermatologist.
There was also a rigid prescription of three different types of medication aimed at treating his symptoms. The medicine improves his blood circulation, reduces inflammation and keeps one of his symptoms, arthritis, at bay.
He’s also taking an antimalarial drug: studies have shown that people with lupus who use antimalarial drugs tend to live longer than those who do not.
‘I made myself stronger’
After spending some time helping his father in the family’s retail business, Vaid signed up for and finished a two-year personal training course, and now works as a mobile personal trainer, training people in their homes.
He has since completed the Argus cycle tour twice, in 2012 and 2013. “I made myself stronger by going to the gym. Moving around also helped me get stronger and doing things for myself helped me become more capable. I had to keep my body moving – if you don’t use it, you lose it, as they say.
“I now want to make a difference in people’s lives: training them and showing them the benefit of a healthy lifestyle and what they are actually capable of because the possibilities are endless if your mind is right.”
The medication he takes does have side effects, including constipation, insomnia and fatigue, but he says this doesn’t bother him. “I don’t concentrate on that.”
According to Paruk and her colleague, Gulam Hoosain Latiff, lupus is becoming increasingly common in South Africa. “It’s very common but often misdiagnosed because the manifestations are very variable and protean – it is a truly multisystem disease,” said Latiff.
“The number of cases being diagnosed is increasing with increased awareness of the disease. [There is] no epidemiological data for South Africa but small studies carried out in Cape Town, Johannesburg and Durban indicate it is a health problem,” Paruk says.
Normal, productive lives
She adds that, although lupus affects all race and income groups, it is most common among young women aged between 20 and 40. “The ratio of females to males is 9:1. Black patients seem to have more severe and resistant disease with a greater tendency towards major organ involvement and this has been seen in the USA as well,” she says.
“Clinical observation suggests that South African Indians have a higher rate of lupus in Durban than whites. This has been noted in Indians in the United Kingdom as well. Lower-income groups often present late with a more severe disease.”
Both Latiff and Paruk point out that – with appropriate therapy– most lupus patients can lead normal and productive lives. Early detection, psychological support, a positive mind-set, good diet, exercise, healthy living, compliance with medication and regular follow-ups are essential, they say.
Ziyaad Vaid is proof that lupus can be conquered. “Keep doing what you’re doing – don’t see it as a weakness or as something that has been taken from you. You’re living your natural life, you’ll be affected at some stages of your life, but you’re still the same person, and able to do the same things.”
What is lupus?
Lupus is a chronic inflammatory disease that occurs when a body’s immune system attacks its own tissues and organs. Inflammation caused by lupus can affect many different body systems – including joints, skin, kidneys, blood cells, brain, heart and lungs.
What causes it?
The cause of lupus is not known. Research suggests that genes play an important role, but genes alone do not determine who gets lupus. It is likely that many factors trigger the disease.
What are the symptoms?
Symptoms vary, but some of the most common symptoms are pain or swelling in joints, muscle pain, fever with no known cause, red rashes, most often on the face, chest pain when taking a deep breath, hair loss, pale or purple fingers or toes, sensitivity to the sun, swelling in legs or around eyes, mouth ulcers, swollen glands, feeling very tired. The most distinctive sign, a facial rash resembling butterfly wings unfolding across both cheeks, occurs in many but not all cases of lupus. Symptoms may come and go. Periods of time when a person has symptoms are called flares, which can range from mild to severe. New symptoms may appear at any time.
How is lupus diagnosed and treated?
There is no single test to diagnose lupus. It may take months or years for a doctor to diagnose it. A doctor may use many tools to make a diagnosis, including medical history, blood tests and a skin or kidney biopsy.
There is no cure for lupus. Its treatment depends on the types of symptoms the patient has as well as their severity.
Depending on the severity of lupus in the individual, treatment can include nonsteroidal anti-inflammatory drugs, antimalarial drugs, corticosteroids and immune suppressants, biologics, or a combination of two or more of these.
Rheumatologists may lower the dose of a drug or stop a medicine because of side effects or when the disease goes into remission.
Alternative treatments – those that are not part of standard treatment – are not recommended.
Sources: National Institutes of Health and the American College of RheumatologyThe autoimmune bullet with butterfly wings
What is lupus?
Lupus is a chronic inflammatory disease that occurs when a body’s immune system attacks its own tissues and organs. Inflammation caused by lupus can affect many different body systems – including joints, skin, kidneys, blood cells, brain, heart and lungs.
What causes it?
The cause of lupus is not known. Research suggests that genes play an important role, but genes alone do not determine who gets lupus. It is likely that many factors trigger the disease.
What are the symptoms?
Symptoms vary, but some of the most common symptoms are pain or swelling in joints, muscle pain, fever with no known cause, red rashes, most often on the face, chest pain when taking a deep breath, hair loss, pale or purple fingers or toes, sensitivity to the sun, swelling in legs or around eyes, mouth ulcers, swollen glands, feeling very tired. The most distinctive sign, a facial rash resembling butterfly wings unfolding across both cheeks, occurs in many but not all cases of lupus. Symptoms may come and go. Periods of time when a person has symptoms are called flares, which can range from mild to severe. New symptoms may appear at any time.
How is lupus diagnosed and treated?
- There is no single test to diagnose lupus. It may take months or years for a doctor to diagnose it. A doctor may use many tools to make a diagnosis, including medical history, blood tests and a skin or kidney biopsy.
- There is no cure for lupus. Its treatment depends on the types of symptoms the patient has as well as their severity.
- Depending on the severity
of lupus in the individual, treatment can include nonsteroidal anti-inflammatory drugs, antimalarial drugs, corticosteroids and immune suppressants, biologics, or a combination of two or more of these. - Rheumatologists may lower the dose of a drug or stop a medicine because of side effects or when the disease goes into remission.
- Alternative treatments – those that are not part of standard treatment – are not recommended.
Sources: National Institutes of Health and the American College of Rheumatology
