Focusing on life’s blessings when living with lupus
Posted on 5 June 2017
When Dr Marlene Morkel was 32, she had everything. An intelligent and beautiful sportswear model with a strong nurturing side, she was halfway through specialising in paediatrics when she started experiencing strange symptoms.
Sitting in the gardens of Mediclinic Stellenbosch, Marlene opens up about her experience with lupus. She was admitted to hospital earlier in the year because her condition has led to blood clots forming throughout her body, resulting in a mini-stroke and pulmonary embolisms.
What is lupus?
Marlene’s rocky health journey started eight years ago. It took four months for her team of specialists to diagnose lupus, a condition Marlene remembers from exam papers in medical school. If they asked for a differential diagnosis (going from the most to least likely diagnoses for a set of symptoms), Marlene says that she and her fellow students knew that they would usually get a mark for writing down lupus.
‘Lupus is an autoimmune disease that affects multiple systems in your body. Instead of your immune system functioning normally and only attacking germs and viruses, it gets reset and starts attacking your own body, and most of your organs,’ she explains.
‘Before being diagnosed, I was vomiting all the time, I had a lot of pain, sometimes I felt I needed to drink four energy drinks during the day because I was chronically tired: something wasn’t right.
‘The doctors I saw initially thought I was suffering from stress-related depression. At the time I was on Critical Care Unit rotation at Tygerberg Hospital, Cape Town, where children sometimes pass away around you, so it was very stressful,’ she admits.
‘But when I took a break, I got so sick that I ended up being admitted to hospital.’
Because Marlene worked in a high-risk setting for diseases such as tuberculosis (TB), her doctors did several tests including a lumbar puncture. Eventually, Dr Landi Lombard, a physician in Kuils River, also in Cape Town, analysed Marlene’s complete blood count and then ordered a lupus antibody study.
She tested positive for a number of antibodies (the proteins produced by the white blood cells that are normally used to neutralise pathogens or germs), indicating lupus.
‘Dr Lombard referred me to Prof Helmuth Reuter, a rheumatologist who was practising at Mediclinic Stellenbosch, and together they diagnosed lupus.’
Pushing past the barriers
Prof Reuter then advised Marlene to stop specialising in paediatrics because stress can worsen the condition.
‘When you do a shift in paediatrics, you work long hours, you hardly sit down, you don’t eat and sometimes you don’t even have time to go to the toilet, it’s just so busy. But I was determined to finish my studies and I have to say that the paediatrics department at Tygerberg was incredibly supportive.
‘When I did my final practical examination in the oncology ward in the Red Cross Children’s Hospital, I was so ill that they had to put up a drip for me and give me anti-nausea medication but by God’s will I passed my studies and qualified as a paediatrician,’ she says. She then entered academia at Tygerberg Hospital.
A second diagnosis
After being closely monitored and having repeat antibody tests, she was later diagnosed with neuro-lupus, a common form of the disease. It happens when lupus attacks the nervous system via antibodies that bind to the nerve cells or blood vessels. It wasn’t long after she qualified in 2012 that Marlene experienced her first near-deadly seizure.
‘My sister was visiting me one Friday evening. There was a knock at the door and one of my neighbours, a doctor, asked if he could use my computer to make an urgent payment. A few minutes into his visit, I lost consciousness. He resuscitated me and I was rushed to hospital.
‘That wasn’t the last time I was saved by someone arriving at my home by chance. Later that year I had a seizure at my boyfriend’s house while he was at work. We’d had a break-in the night before and by chance my mom came by to check on the house.
‘While we were watching TV, I got up to go to the toilet. My mom heard a loud noise; not wanting to disturb me she waited before checking on me. When she eventually opened the bathroom door, I was lying on the floor, blue and not breathing.’
As the years wore on, her condition worsened, and included kidney problems, restrictive lung disease, pericardial effusion (fluid sacs forming around her heart) and arthritis. ‘If I had to compare the pain to something many people experience, I would say that unless I take my pain medication, I feel as if I have a few broken bones.’
People with lupus also experience skin rashes or vasculitis (inflammation of the blood vessels in the skin) if they go into the sun, and often get a typical butterfly rash on their face.
‘I take 16 pills every day to deal with symptoms of the disease and the side effects of the drugs themselves.
‘Some of the lupus medication can make you go blind, so I see an ophthalmologist regularly. I also see a neurologist, a neuropsychiatrist, a rheumatologist, a surgeon, sometimes a physiotherapist, the list goes on and on. It’s mind-bogglingly difficult to treat me; I’m just glad I’m not my own doctor,’ she jokes.
The good with the bad
Marlene says the hardest part is how she looks normal despite the debilitating condition, and the feeling that she is constantly letting people down. ‘I recently had to cancel going to a close friend’s 40th birthday and that hit me hard.’ She says it’s also heart-breaking that she can’t work with the little patients she loves so much.
But she admits that she has many good days where she’ll go to her uncle’s wine farm or shopping with her boyfriend. ‘Andre, my boyfriend of six years, is absolutely amazing, and says he will be by my side forever, whatever it takes’.
‘I love being around people and it’s my love of people and immense support in my life that keeps me going. My parents, sister and friends support me a lot, as do the people in the hospital: ‘I’ve been coming to Mediclinic Stellenbosch since I was first diagnosed eight years ago, and the facilities, the staff, my team of doctors, they’re just incredible’.
While Marlene stays positive she admits that she doesn’t feel blessed to have lupus. She wishes every single day that she could get better and have the opportunity to be a practising paediatrician again. ‘But whatever I’ve been through, I’m still here,’ she smiles.
There is the hope of better immunosuppressant therapy coming out of the USA and Europe where more people are accurately diagnosed and treated for lupus.
‘We must make people more aware of lupus in South Africa. If you feel you have a lot of inexplicable symptoms, get them checked out and get second opinions until you have the right answers.’