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Living with lupus: 3 women tell all

Our powerful nutrition protocol might bring Lupus under control. It will relieve symptoms.

 

Durban – It’s known as the “great impersonator” because its symptoms mimic those of other conditions, making it difficult to diagnose. Three people share how lupus has affected their lives

 

SCARED, BUT ON GOOD DAYS I HAD HOPE

Sharde Tarr, student

As she was heading into the home stretch of a Bachelor of Sports Science degree last year, University of Pretoria student Sharde Tarr started having pains in her hands, arms and joints that, at times, were so bad she could hardly get out of bed. It was not what she needed, with final exams looming.

 

She was referred to a specialist who diagnosed reactive arthritis and prescribed cortisone.

“It was amazing – the pain went away and in a few weeks I was fine, even after stopping the cortisone,” she said.

She registered for Honours and stayed healthy for most of last year, despite a low white blood cell count.

In October, new symptoms cropped up and she battled with fatigue, a sore throat, poor concentration and a lack of energy. Her white blood cell count plummeted and she was rushed to hospital.

After a series of injections to stimulate the white cell count, copious antibiotics and in a ward where everyone wore surgical masks for three days, the specialist confirmed it was lupus.

“I had never heard of lupus and I was scared to google it, but I did hear all about it attacking my good cells and that it was an auto-immune disease with no cure.

“I felt scared but on good days I had hope and having my parents and friends there – plus a good doctor – helped. I was often nauseous, hardly ate and had a temperature for most of the time.”

Tarr was discharged and referred to a nephrologist – lupus had attacked her kidneys.

After a kidney biopsy, the specialist diagnosed grade three lupus nephritis, which, he said, could be controlled with medication – some of his patients had even gone into remission.

Says Tarr: “I have almost come to terms with having lupus.

“The worst part has been putting on weight because of the cortisone pills but water retention tablets have helped.

“This year, I am going back to gym and will watch my diet, cutting down on carbs and too much sugar.

“I am fine in myself, full of energy and have no pain, but I know I must take this day by day. My life has changed for ever but I have faith in God and lots of support. It’s a challenge I am taking on and I am not going to give up.”

I HAD TO LEARN TO WALK AND EAT

Zanele Zulu, newspaper photographer

Sometimes, when chasing a good news picture or playing with her two young children, Zanele Zulu can’t believe how far she has come and how lucky she is to be alive. Her experience of lupus was devastating and at one point life-threatening.

But she survived, and today she is well – and loving life.

Lupus’s first appearance was in 2005. “My joints were painful, my hands and feet were swollen and I couldn’t bend my fingers, making it difficult for me to do my job,” she says.

“I went from one GP to another, and even a sangoma, trying to get answers, but nobody knew what it was. After a year, I still had no diagnosis and felt worse than ever.”

The following year, she deteriorated.

“I had painful, swollen legs, a rash, mouth ulcers, hair loss, and one evening I could not even stand up. I was taken to hospital where a doctor suspected lupus. I had never heard of it but I was too ill to care.”

She was struggling for air and a tracheotomy was performed to enable her to breathe. She later learnt that one lung was bleeding and had collapsed. She was rushed into ICU and spent 63 days on a ventilator.

“I don’t remember much as I was so sick. At one stage I wanted to die and would be angry when I woke up. But God must have had a plan for me and I survived.

“As I improved, I had to learn to walk and to eat. Lupus had affected my lungs, kidneys, liver and skin and, when I left hospital, I had to take 35 tablets a day.”

Zulu improved, went back to work and, the following year, had her first baby.

“My pregnancy went well but I had to be closely monitored. Some medication had to be stopped. I had to inject myself every day with an anti-clotting drug and Ayanda was delivered by C-section. Ayabongwa was born six months ago after a trouble-free pregnancy.

“Now, I take eight tablets a day and I am used to that. I see my doctor every six months. There is no cure for lupus, but you can manage it with medication and lifestyle changes. Life can return to normal.”

I WILL NOT ALLOW IT TO SLOW ME DOWN

Dianne Kohler Barnard, DA spokeswoman on police

Dianne Kohler Barnard was diagnosed with lupus 27 years ago while living in London and running a news agency. She had tried for years to have a baby and had had a series of miscarriages, finally falling pregnant with her son, Peter.

One day when shopping, she began hallucinating. “I had no idea where I was,” she recalls.

This was followed by more episodes. “It was like living with the equivalent of three radios playing in my head, 24 hours a day. Eventually I couldn’t even write my own name.”

Doctors ruled out several life-threatening conditions, including tumours. She deteriorated rapidly before she was diagnosed with lupus. It had targeted her liver and brain. “I was told that I would die. Within weeks I could barely stand upright and the future was just blanked out.”

She was flown back to South Africa and was later joined by her husband, journalist Royston Barnard. Peter was born soon afterwards by emergency Caesarean section, weighing 2kg.

“From a woman desperate to have a child, I emerged a massively damaged and cripplingly thin shadow who wanted nothing to do with my baby. The poor little boy was cared for by everyone but me for weeks. It took two years for me to finally be able to cope with visitors without a panic attack.”

Four years after diagnosis, Kohler Barnard’s white blood cell count dropped dramatically and a doctor recommended chemotherapy, but she put her foot down.

“I refused. I was determined to put this illness in its place. I researched extensively and disagreed with much of what I read.

“I took up running – just about passing out as I managed a tiny 3km with my sister, and working up to regular 10km sessions. I joined a gym, ate well, worked out and lost weight.”

Today, Kohler Barnard lives a busy and active life, with occasional flare-ups.

“I will not allow SLE (systemic lupus erythematosus ) to slow me down. I’m a shadow minister of police, a Whip of the National Assembly, and DA deputy chairperson of KwaZulu-Natal.

“I have achieved that, despite having been diagnosed with SLE.

“One of the many side effects (aside from migraines, stiffness of joints, pain, rashes caused by sunshine) is massive exhaustion. So I have a sentence I use: ‘I’ll sleep tomorrow.’ I say that every day. I can’t live my life like an invalid. – why would anyone choose to?”

WHAT THE CONDITION IS

* Lupus is Latin for “wolf”. It got this name because the rash that appears across the faces of sufferers resembles a wolf. The shape of the rash has also been likened to that of a butterfly.

* It is a chronic auto-immune condition in which the body turns on itself. With lupus, the immune system can’t tell the difference between healthy tissue and foreign invaders, such as viruses and bacteria. It releases antibodies which attack healthy tissue. The result is inflammation, pain and damage to tissue.

* There are various forms of lupus. One of them affects only the skin and is called discoid lupus. This is the type that left scarring on the face of singer Seal. The most serious one is called systemic lupus erythematosus or SLE. Systemic means it affects the whole body and erythematosus means red.

* SLE is very difficult to diagnose, because it can appear to be many other conditions, from rheumatoid arthritis to myalgic encephalopathy or blood diseases. Diagnosis is based on a combination of blood tests and an evaluation of clinical criteria. Dr Richard Siebert, a specialist physician in Pretoria, says often there is a delay in diagnosis as people live with symptoms, like fatigue or joint pain, for years before they consult a doctor.

* It is 10 times more common in women than men and typically develops in the child-bearing years of 15 to 35. The genes which can mutate or contribute to the onset of SLE are carried in the X chromosome, of which women have two, while men have one.

* The condition can present very differently – a mere nuisance to some and life-threatening to others. Aside from the skin rashes, the most common symptoms are crippling fatigue and joint pain, which can’t be seen. This means sufferers may not get much sympathy and understanding from family, friends and acquaintances.

* Other symptoms include fever; swollen lymph glands; mouth ulcers; hair loss; sensitivity to the sun; headaches; migraines; fingers turning white or blue; shortness of breath; anaemia; seizures; high blood pressure; inflammation of the membranes around the lungs and heart; kidney problems and depression.

* Symptoms can also come and go – periods of flare-ups and then remission . Left untreated, lupus can lead to cancer, heart, liver or kidney problems and osteoporosis. It can even cause blindness. Between 80 and 90 percent of sufferers can expect to live a normal lifespan.

* There is no cure but medication can help manage the symptoms and reduce the chances of organ damage. These include anti-inflammatory and anti-malaria drugs, painkillers, corticosteroids, injectables for treating anaemia and, in more serious cases, immunosuppressants and chemotherapy drugs. Some patients can be taking a handful of pills a day to alleviate symptoms.

* Celebrities who have lupus include singers Toni Braxton, Selena Gomez and Seal, TV personalities Nick Cannon and Paula Abdul and 3rd Rock from the Sun actress Kristen Johnson.

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Our powerful nutrition protocol might bring Lupus under control.

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