A lack of knowledge and information is one of the major causes of stigma around illnesses, this is especially true for rare diseases like Multiple Sclerosis
Dr Pholosho Mokoena, Medical adviser for Neuroscience at Novartis South Africa, says breaking the stigma around MS can contribute to early diagnosis, better treatment and better care for those living with MS.
What is Multiple Sclerosis?
Multiple Sclerosis (MS as it is commonly known) is a rare neurological disease where the immune system attacks the nerves. This affects communication between the body and the brain and can lead to loss of mobility in varying degrees.
Although the cause of MS is still unknown, Dr Mokoena says it is important to know that MS is not contagious.
“The community needs to understand that MS is not contagious and most individuals with MS can be supported in the community with dignity,” he says.
“The specific cause still remains a mystery. However, it is thought to be a complex disease triggered in susceptible individuals by genes, epigenetics and environmental factors such as Epstein Barr virus, vitamin D, sunlight, and smoking, which are all well recognized epidemiological risk factors,” explained Dr Mokoena.
Although MS is not easy to diagnose, seeking medical advice if you suspect you or someone close to you may have MS is always the first step.
Some of the most common symptoms of MS are numbness, tingling, struggling to think, plan and learn, impaired movement, depression, blurred vision and bowel and bladder problems.
Because these symptoms could be a number of other health issues, MS is difficult to diagnose. However being treated for your symptoms can rule out other illnesses bringing you closer to the correct diagnosis.
“In the first instance, talk to your GP about the symptoms you are experiencing. The GP might not be able to make a diagnosis of MS, but can assess your symptoms and rule out alternative conditions that could be causing your symptoms. In May 2019, NICE (the National Institute for Health and Care Excellence) issued new guidance to GPs to help them identify people who may have a neurological condition and who should be referred to a specialist,” says Dr Mokoena.
Caring for someone with MS
MS is a lifelong disease that can be managed through treatment, however people with MS lose mobility at varying stages and rates.
Dr Mokoena says it is possible to care for a loved one with MS at home, however learning how to perform a variety of nursing functions and being aware of the type of care your loved one will need is important.
Dr Mokoena says understanding the following can help you nurse your loved one with dignity:
Losing bladder and bowel function can be heartbreaking, but being prepared for it can make a huge difference.
Someone with progressing MS who gradually loses their mobility may end up spending more and more time in bed, in a recliner, or a wheelchair.
Like with many chronic illnesses; loneliness, anxiety, and depression are mental health realities that need to be addressed.
Managing loss of mobility
Going to physical therapy, supporting your older adult when they stand or walk, and reducing fall risk hazards at home can make coping with the physical changes easier on both them and you.
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