Contracting Neuromyelitis Optica was a bolt from the blue for Jean Slabbert. Globally, the illness occurs in only one in a million people. Jean has successfully fought this paralysing and blinding illness and lives to share his ‘miracle’ story.
Disease attacks Jean’s immune system
Neuromyelitis Optica shares a number of clinical and radiological features with multiple sclerosis, but is very aggressive, causing the immune system to attack the optic nerves and spinal column, causing blindness and paralysis. In Jean’s case it prompted multiple attacks and also led to treatment complications and infections in his heart and chest cavity. It was only classified as a disease entity in its own right in 2004 after the discovery of a novel, pathogenic autoantibody in a subset of patients.
For Jean, the onset of the disease was marked by a month and a half of headaches, dizziness, an inability to urinate and several emergency admissions. Jean was positively diagnosed on 31 January 2014, one and a half months after his initial symptoms.
His initial paralysis and blindness were accompanied by extreme tactile sensitivity. “Whenever somebody touched me, I’d feel extreme pain as if someone was burning me with red coals. The treatment involved wiping out my immune system using an experimental biological drug. When the doctor said I wouldn’t be able to walk for six months, I hit an all-time low. Prayer, a compassionate nurse and two inspirational songs called ‘’Go the Distance,” by Michael Bolton and “Courageous” by Casting Crowns, inspired me to decide that failure was not an option. The question was not – Why this, why me, why not someone else, but rather how do I deal with this?” Jean says.
His ensuing two-year-long return to full health had his neurologist shaking his head in wonder and his friends and wife, Suzy, full of admiration at his faith and courage.
Fuelled by his own faith, he found himself counselling four in-patients, suffering from other maladies, who were struggling with relationship challenges. “Blind and paralysed I was unable to do anything for myself, but I was able to speak life into their situations,” he adds.
Jean defies medical predictions
Then, on 8 April 2015, he was able to move his toes for the first time during a physiotherapy session and slowly his sight returned. “From then on my recovery was remarkable,” Jean says.
He was finally out of his wheelchair on 28 April 2015, soon after his hospital discharge.
“I was told I would need 24-hour care but God had other plans. I took my first steps on 12 April 2015. Six days later I walked about ten metres with a walker and took my first shower independently,” he recalls.
Jean meets his wife-to-be, Suzy
Five months later Jean met his future wife Suzy, through a mutual friend. ”Suzy is a personal trainer who specialises in rehabilitation. I was learning to walk again and I thought she’d never take me with all my baggage. So, I called her up and we went on a date. Six months later I asked her to marry me and, incredibly, she said ‘YES’. I worked out that in the first three months we knew each other, I spent 21% of those nights in hospital - and yet she stuck around!” he enthuses.
Jean Slabbert is going to be a first-time father in February 2019. The 37-year-old believes that faith, hope and love from family, friends and hospital staff at the Pretoria hospital where he was treated, enabled his medical miracle. His positive attitude and determination during his rehabilitation, combined with the latest available biological medicines, saw Jean back on his feet, regaining the 18kg he’d lost and returning to fitness. Today Jean’s in a new job as Senior Monitoring and Evaluation Adviser, HIV counselling and Testing, at the Foundation for Professional Development.
Medical cover supports Jean throughout
“Discovery Health Medical Scheme (DHMS) were brilliant throughout. Without them I wouldn’t be alive today. Their Health Touch team giving me access to a dedicated person to take care of me, was amazing. A Clinical Manager took my very costly, experimental Rituximab monoclonal antibody therapy drug to DHMS’s clinical review panel and kept me up-to-date, right up to the successful funding outcome. I still go in for two, six-hour infusions every six months to reduce inflammation and suppress my immune system. I’ve been in remission for two years now and have DHMS to thank for it,” he says.
“I’ve worked out that my treatment totalled to around R4 million in hospitalisation, drug, surgical procedure and consultation costs over a two-year period,” he says. “There are very few people in the world who can afford that medical cost. I am truly grateful to DHMS for the cover I had,” he adds.
The Discovery Health Medical Scheme is an independent non-profit entity governed by the Medical Schemes Act, and regulated by the Council for Medical Schemes. It is administered by a separate company, Discovery Health (Pty) Ltd, an authorised financial services provider.