Support group for MS sufferers launched

BIANCA Ozcan (25) is a young mother with a loving husband who just got a big promotion at work.

She was also diagnosed with multiple sclerosis (MS) a year ago. It all started in 2001 when Bianca started vomiting, suffering dizzy spells and severe pain in her legs.She was hospitalised and numerous tests were done.She was referred from one doctor to the next without success.The symptoms disappeared just as unexpectedly as they had appeared.Bianca and her family were flabbergasted but a year later everything came back and once again tests were done and she was referred from doctor to doctor without getting any answers or a proper diagnosis.This went on for another two years.In 2004 she had a baby and the pain and dizzy spells returned, much worse than before.Doctors diagnosed her with “baby blues” or post-natal depression.Eventually she saw a neurologist, who did an MRI brain scan and a lumbar puncture, but it took another year before Bianca was definitely diagnosed with multiple sclerosis.She was sent to Cape Town and more tests were done to confirm the diagnosis.”When I first was told that I had MS I thought to myself, okay whatever.It didn’t mean anything to me as I didn’t know anything about the disease, but when the doctor started explaining to me that I had to go to Cape Town for more tests and that I would have to go onto chronic medication and that I had to inject myself once a week I slowly started to understand what MS was all about,” says Bianca.She started reading up about MS and discovered that many MS patients are helpless and completely reliant on other people.She realised that she was actually very fortunate.”This is no time to be sad, I have to grab every opportunity and live.A person does not know where this disease will take you.Tomorrow you can have another attack and you could be left helpless and dependent on others.”Bianca’s attacks come once a year – she had the last one in November last year, which left the left side of her body paralysed.She was in excruciating pain and was hospitalised for several weeks.That is when she came up with the idea of starting the Multiple Sclerosis Namibia Welfare Organisation, which was launched last month.The organisation hopes to involve health professionals, pharmaceutical companies and medical aid funds.The main aims of the organisation are to raise awareness of MS, support people with MS and their families through meetings and discussions, and educate the public on the needs and problems of people with MS.It will also try to raise funds to help people with MS cover their medical costs.MS is a chronic disease of the central nervous system.The nerves are protected by a fatty tissue called myelin, much like electric wire is insulated with plastic.MS is characterised by recurrent or chronically progressive dysfunction that is caused by damage to the myelin.The underlying cause of the damage to the myelin is unknown.The symptoms of MS include vision problems, speech problems, swallowing and breathing difficulties, mobility problems, loss of co-ordination, a tingling feeling, numbness or loss of sensation in any part of the body and bladder control problems.Tremors or shaking, severe pain, depression and difficulty in concentrating and memory loss are also symptoms of MS.Almost 20 per cent of people diagnosed with MS experience a minimal disability and the deterioration is minimal over a long period of time.Benign MS is an almost ‘inactive’ form of MS.Relapsing or remitting MS is the most common and most unpredictable form of MS and it is characterised by the coming and going of symptoms in varying severity.Patients seem to recover fully from the first attacks but there is a general worsening over time.No attacks or remissions are clearly distinguished by people with secondary progressive MS, but there is a slow deterioration.Most people with relapsing-remitting MS will eventually change to this type because of the natural progression of the disease.The most serious form of MS, occurring in almost five per cent of people with MS, is primary progressive MS.This type of MS is the result of widespread damage to the myelin and causes fast deterioration and a shortened life expectancy.MS cannot be cured and does not normally affect live expectancy, but can have a serious effect on quality of life.Women are more often affected by MS than men, with a ratio of three women to one man.Sixty per cent of cases are diagnosed in people between the ages of 20 and 40.”Medicine alone will not be enough to carry me down this road with MS.I would like to bring MS out of the shadows and into a global understanding and acceptance by launching the Multiple Sclerosis Namibia Welfare Organisation,” says Bianca.People who would like to contribute to the organisation, who need information or would like to get into contact with other MS sufferers are welcome to visit its website at www.msnamibia.org, or send e-mail to msnamibia@gmail.com.It all started in 2001 when Bianca started vomiting, suffering dizzy spells and severe pain in her legs.She was hospitalised and numerous tests were done.She was referred from one doctor to the next without success.The symptoms disappeared just as unexpectedly as they had appeared.Bianca and her family were flabbergasted but a year later everything came back and once again tests were done and she was referred from doctor to doctor without getting any answers or a proper diagnosis.This went on for another two years.In 2004 she had a baby and the pain and dizzy spells returned, much worse than before.Doctors diagnosed her with “baby blues” or post-natal depression.Eventually she saw a neurologist, who did an MRI brain scan and a lumbar puncture, but it took another year before Bianca was definitely diagnosed with multiple sclerosis.She was sent to Cape Town and more tests were done to confirm the diagnosis.”When I first was told that I had MS I thought to myself, okay whatever.It didn’t mean anything to me as I didn’t know anything about the disease, but when the doctor started explaining to me that I had to go to Cape Town for more tests and that I would have to go onto chronic medication and that I had to inject myself once a week I slowly started to understand what MS was all about,” says Bianca.She started reading up about MS and discovered that many MS patients are helpless and completely reliant on other people.She realised that she was actually very fortunate.”This is no time to be sad, I have to grab every opportunity and live.A person does not know where this disease will take you.Tomorrow you can have another attack and you could be left helpless and dependent on others.”Bianca’s attacks come once a year – she had the last one in November last year, which left the left side of her body paralysed.She was in excruciating pain and was hospitalised for several weeks.That is when she came up with the idea of starting the Multiple Sclerosis Namibia Welfare Organisation, which was launched last month.The organisation hopes to involve health professionals, pharmaceutical companies and medical aid funds.The main aims of the organisation are to raise awareness of MS, support people with MS and their families through meetings and discussions, and educate the public on the needs and problems of people with MS.It will also try to raise funds to help people with MS cover their medical costs.MS is a chronic disease of the central nervous system.The nerves are protected by a fatty tissue called myelin, much like electric wire is insulated with plastic.MS is characterised by recurrent or chronically progressive dysfunction that is caused by damage to the myelin.The underlying cause of the damage to the myelin is unknown.The symptoms of MS include vision problems, speech problems, swallowing and breathing difficulties, mobility problems, loss of co-ordination, a tingling feeling, numbness or loss of sensation in any part of the body and bladder control problems.Tremors or shaking, severe pain, depression and difficulty in concentrating and memory loss are also symptoms of MS.Almost 20 per cent of people diagnosed with MS experience a minimal di
sability and the deterioration is minimal over a long period of time.Benign MS is an almost ‘inactive’ form of MS.Relapsing or remitting MS is the most common and most unpredictable form of MS and it is characterised by the coming and going of symptoms in varying severity.Patients seem to recover fully from the first attacks but there is a general worsening over time.No attacks or remissions are clearly distinguished by people with secondary progressive MS, but there is a slow deterioration.Most people with relapsing-remitting MS will eventually change to this type because of the natural progression of the disease.The most serious form of MS, occurring in almost five per cent of people with MS, is primary progressive MS.This type of MS is the result of widespread damage to the myelin and causes fast deterioration and a shortened life expectancy.MS cannot be cured and does not normally affect live expectancy, but can have a serious effect on quality of life.Women are more often affected by MS than men, with a ratio of three women to one man.Sixty per cent of cases are diagnosed in people between the ages of 20 and 40.”Medicine alone will not be enough to carry me down this road with MS.I would like to bring MS out of the shadows and into a global understanding and acceptance by launching the Multiple Sclerosis Namibia Welfare Organisation,” says Bianca.People who would like to contribute to the organisation, who need information or would like to get into contact with other MS sufferers are welcome to visit its website at www.msnamibia.org, or send e-mail to msnamibia@gmail.com.