La Femme Correspondent
MULTIPLE sclerosis support organisations in 47 countries – including South Africa – will be celebrating World Multiple Sclerosis Day today. Started in 2009, the day is to raise awareness of MS as a global issue and raise funds to support the work of the global MS movement including research.
MS is an illness of the central nervous system that cannot be cured and often has a devastating effect on the life of the person with it, his or her family and friends.
Irene, 49, a long term survivor, remembers: “When I was 16, I suddenly realised I was blind in one eye. Fortunately a cortisone shot brought my sight back, but that was the start of a long struggle with a disease that constantly surprises me with attacks on different parts of my body.”
Barbara, 46, says: “I worked very hard to develop my career as a professional scientist but MS destroyed my career and I was boarded.”
Thembi says: “My daughter got sick at 13, was diagnosed at 14 and died at 17. It just upset me that I couldn’t do more for her.”
Nadine, 50, says: “Now I walk holding onto walls and furniture – I used to be a very active person but for five years I haven’t been out the house. I loved the kitchen and I loved to cook but now I can’t stand. My partner is an angel – he baths me, he does everything for me.”
The MS Society of South Africa estimates there are about 5000 people living with MS in this country. However, because of the stigma of the disease and the difficulties of diagnosis, no one is sure just how many people are suffering from this debilitating disease.
Those living with MS have to take regular immune-modulating medications which are extremely costly. At the same time, medical research continues with many new medications being tested and being reported as wonder drugs.
Some of these will cost at least R 250000 a year if they become available in South Africa. Other miracle drugs have merely sped up the disease or caused serious side effects. Neurologists treating people with MS are cautious as every person responds differently to the drugs available, and many are still in expensive and lengthy trials.
The MS Society of South Africa runs a 24-hour helpline. A qualified social worker is available through the Sophiatown-based offices of the Inland Branch which covers Gauteng, North West, Mpumalanga, Limpopo and the Free State.
Knowing who has MS in South Africa and where they live is critical to monitoring the disease and lobbying government and other stakeholders for better services. Information is handled confidentially by the MSSA and it is keen to get in touch with those who are suffering from the disease but may not be aware that support is available.
People with MS, their families, caregivers, loved ones, the medical fraternity and social workers all make use of this service for information and support around the illness.
MSSA can be contacted 24 hours a day on 0860-456-772 (leave a message and your call will be returned soonest) or e-mail: firstname.lastname@example.org
IMMUNE SYSTEM ATTACKS THE BODY
MS is an illness of the central nervous system. For unknown reasons, the immune system attacks the body, causing damage to the myelin coating around nerves, causing messages from the brain not to reach their destination.
The cause is unknown but all MS sufferers experience fatigue, find it hard to balance , and may find all or some of their senses suddenly not working.
There is no cure for MS, but immune-modulating medications have become first-line treatment.
MS symptoms include, but are not limited to, extreme fatigue, visual changes, walking problems, tremor, bladder and bowel problems, sensory changes, speech and swallowing difficulties, mood changes and memory.
Confirm any suspected diagnosis with a MS specific neurologist as soon as possible.
MS is diagnosed by neurologists using a clinical approach: MRI, past history, symptoms experienced neurological exams, blood tests, evoked potential testing and lumbar puncture.
Amongst others, the following celebs have/had MS:
Richard Pryor, Teri Garr, Fraser Robinson III (father of Michelle Obama)