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Multiple Sclerosis
| Date: |
05 July 2010 07:00 |
| Producer: |
Liz Fish
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| Presenter: |
Bongani Bingwa
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| Show: | Carte Blanche Medical |
Roxcee Germishuizen: 'I was sleeping and when I woke up I could not see anything. I was actually very scared; I thought I would never see again.'
Roxcee Germishuizen is one of the youngest known Multiple Sclerosis sufferers in South Africa. MS is very rare in children; her first symptoms appeared at [age] six. Her mom, Julie, says it was a critical time in her life as she was just about to start school.
Julie Germishuizen: 'Right now the MS is invisible, but it is not always like this. When she gets sick, she gets very, very sick. What happens, her vision goes straight away and then she has slurred speech and the effort just to hold something, be it a pen or a cup. She trembles and sometimes the one side of the body, normally the left side, she actually drags the one side of her body. The balance... she can only stand on her legs for a few minutes a time. She gets very, very weak and vomiting; she has dizziness in the head.'
Deon Germishuizen is devastated by his daughter's illness.
Deon Germishuizen: 'It really gets bad. She basically can't get out of bed. You have got to carry her, and the thing is, all the body parts ache. So, it's not just picking her up, and then she shouts because of the pain.'
Multiple Sclerosis is an auto-immune degenerative disorder of the central nervous system, affecting the brain, optic nerve and spinal cord. Nerve fibres have a protective layer called myelin, which nerve signals travel along. In MS the myelin pathways are damaged. Depending on where the scars are in the brain and spinal cord, movement, feeling and co-ordination can be affected.
Bongani Bingwa (Carte Blanche presenter): 'Each individual displays different symptoms, depending on which portion or portions of their nervous system have been affected. And to add to the frustration over time, some of these symptoms may come and go, others will completely disappear or get worse with time.'
Actress Irene Stephanou has been living with MS for the last 31 years. At 16, she tripped and went blind in her left eye. A doctor injected cortisone into her eyelid and she regained her sight. It was 10 years before her next attack, and this time she lost all sensation in her feet.
Irene Stephanou (Actress): 'I was just terrified, terrified. No doctor explained to me that you can still live a good life, a full life, it is fine. I thought, 'Eee! I am going to die, it's going to be terrible,' and then I had to go through a process of discovery.'
There are four different types of MS: benign MS - a few attacks, complete recovery and the disease burns out. Relapsing remitting MS, which both Roxcee and Irene have, which means they have a number of attacks and the symptoms come and go and disability can gradually accumulate with each attack.
Irene: 'My type of MS is relapsing remitting. So, get an incident, get an injection with cortisone, and it would pass, like the blindness in the eye, being paralysed in one hand, numb in my feet, terrible Bell's palsy. But now I am in my late 40s. I have got a problem in my leg so I have got a little bit of a limp and it's what happens when you get older and he said there is nothing he can do about it.'
Secondary Progressive MS is after a number of attacks they get progressively more disabled often initially having had relapsing remitting MS. And the worst is Primary Progressive, the symptoms are bad from the outset, and get progressively worse.
Prof Girish Modi (Neurologist): 'All these types are retrospective diagnosis. In other words, we can only tell your type after the event. We have no ways of predicting what kind of MS you have.'
Professor Girish Modi is a neurologist and chief specialist and Academic Head of Neurology at Wits University. He says that diagnosing MS is difficult because there is no clinical benchmark. Symptoms are not MS specific and can be found in other illnesses. The catch, though, is:
Prof Modi: 'The earlier you start this treatment, the earlier you reduce the attacks or relapses and the less the cumulative disability.'
It was three years before Roxcee was finally diagnosed.
Prof Modi: 'There is no cure, but there is treatment, and one has to be very aggressive. We are actually managing a disease. So, during an attack you have to give them high doses of cortisone. It reduces the symptoms; sometimes it reverses the symptoms and results in fewer disabilities. To prevent attacks, the immune modulated therapies are available. Unfortunately they are not absolute, the interferons. They reduce your risk of an attack by 50%. They do not reduce attacks; which means there is an ongoing reduction in the ongoing disability. Even when you are not having an attack, you still have active disease.'
MS is an immune disease and Irene firmly believes that maintaining a healthy lifestyle has reduced her attacks.
Irene: 'When I got diagnosed with this I thought, 'Right, you have to eat three meals a day and you have to rest properly...' And I do yoga, which is a major commitment in my life. When an MS person gets exhausted, your whole nervous system goes out of sync, so I find myself bumping into things.'
MS is one of the most expensive illnesses, and for the Germishuizens it has practically broken them financially.
Bongani: 'Injections alone can cost up to R9 000 a month.'
Julie: 'We are very lucky because the medical aid covers the injections, but once you are diagnosed they will not cover the MRI scan. But we need the MRI to keep updated. And it is not just the one doctor - it's the paediatrician, the neurologist, the ophthalmologist; it's the blood tests - the cost comes in there.'
Irene is able to work, but is limited by her strict routine which takes up a large part of her day.
Irene: 'I am very lucky that I have a very supportive family. There are people in appalling situations who need wheelchairs, because the wheelchairs are so old and they are not the latest kind of wheelchairs, because they are strong enough. And people who need nappies. And there aren't funds to look after them, so it's very stressful.'
Stress and heat are their biggest enemies because they can bring on attacks. And although there is no cure in sight, MS sufferers like Roxcee, who has an injection every second day, are looking forward to the oral medication which will reduce the risk of relapses by 60%.
Bongani: 'How do you support somebody with MS?'
Irene: 'I think you listen, you see, and you are just there for them, try and be their friend, but not in this kind of way... If people are pitying me they are not communicating in a healthy and equal way with me.'
Because MS is so rare in children, the challenges of parenting a child with MS [are] very isolating.
Julie: 'Sometimes my heart is very, very sore for Roxcee because sometimes she can't do what other kids do. And I know she gets cross and frustrated. And then I am also worried about the future as Roxcee gets older... relationships, a career, getting a job.'
Irene is an inspiration. She has done three extremely successful tours of her one-woman shows to Australia and Greece and a national tour in South Africa - and recently married the love of her life.
Irene: 'There is just too much I want to do and I am determined to do it in the best way I can while I am on this planet. But hey?'
Bongani: 'When you see other people that are suffering, do you ever worry that that is going to be you one day?'
Irene: (Nods 'yes')
Bongani: 'And how do you deal with that?'
Irene: 'I don't know what will happen to me, but nor does my doctor and nor do any human beings. So, there are times of extreme loneliness, extreme fear, but it's also about one's relationship to mortality and life.'
IMPORTANT DISCLAIMER:While every attempt has been made to ensure this transcript or summary is accurate, Carte Blanche or its agents cannot be held liable for any claims arising out of inaccuracies caused by human error or electronic fault. This transcript was typed from a transcription recording unit and not from an original script, so due to the possibility of mishearing and the difficulty, in some cases, of identifying individual speakers, errors cannot be ruled out.
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