MS: How Well Do You Know The Snowflake Disease?

As a result of its unpredictability and varying symptoms, Multiple Sclerosis (MS) has earned the nickname the ‘snowflake disease’. MS is a chronic central nervous system condition, characterized by inflammation, demyelination and degenerative changes that interrupt the flow of information within the brain, and between the brain and body. MS can also become disabling, leading to paralysis and blindness.

“The symptoms of MS are unpredictable and vary considerably between different patients,” explains Dr Natanya Fourie, Neurologist in Private Practice in Pretoria. “This disease can lead to symptoms including numbness, pain, muscle stiffness, balance fallout, visual loss, as well as problems with memory, mood and chronic fatigue. These symptoms are clearly not very specific to MS, so having these symptoms justifies referral to a neurologist, but does not necessarily mean that one has Multiple Sclerosis.”

MS is one of the most common diseases of the central nervous system.

It has been estimated that over 2,500,000 people around the world suffer from Multiple Sclerosis. Most people with this disease are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease.

“Luckily there are treatment options to control MS. In South Africa we have five commonly-used classes of medication, called disease modifying drugs, registered to treat MS,” explains Dr Nicola Lister, Chief Scientific Officer & Medical Director, Novartis Southern Africa. “Progression in MS is frequently measured by a scale that measures a person’s ambulation, called the Expanded Disability Status Scale (EDSS). If it progresses, the person with MS may increase on the EDSS scale and reach a point where they may require aids to walk. Many years ago when we did not understand the disease as well as we do now, when people with MS progressed past a certain point on the EDSS, doctors would stop treatment, feeling that it would no longer be effective.”

When treatment is stopped and the person still has active disease, the disease will progress, leading to further disability over time. The symptoms depend on where in the brain the immune system is attacking, so progression of the condition may lead to physical or cognitive symptoms (or both).

“Today, we understand that upper limb function and cognition are very important factors to consider. Even if a person with Multiple Sclerosis loses their ability to walk in some cases of severe disease, we can still protect their ability to work with hands and to think clearly,” says Dr Lister.

“Although there is still much that we do not fully understand about the pathophysiology of MS, the last 20 years have provided a significant number of treatment options that improve prognosis and quality of life for people with MS. Furthermore, the growing body of evidence highlights the importance of early and ongoing access to disease-modifying therapies.”

Disease modifying treatments (DMTs) treat the underlying cause of the disease and can prevent or limit the immune system from attacking the nerves in the brain. The aim of treatment is to prevent disease progression and thereby protect physical and cognitive abilities. It should be noted though, that these DMTs don’t always fully control the attacks from happening. Some people live many years on one type of medication without ever progressing, some with more aggressive disease progress despite treatment. 

Professor Gavin Giovannoni, a leading expert in Multiple Sclerosis based in London, UK, launched a social media campaign under the banner #ThinkHand in support of the notion that treatment should continue in a bid to protect upper limb function and cognitive abilities, even if the person with Multiple Sclerosis becomes unable to walk.

“For World MS awareness day coming up on the 30th of May, Novartis would like to raise awareness among doctors and people with MS that quality of life is not dependent only on people’s ability to walk unaided: people with Multiple Sclerosis can still enjoy a very productive life with the right support and interventions to take care of upper limb and cognitive function,” says Dr Lister. Click here to find out more about the research done on this topic.

“There has been a significant increase in our understanding of the disease, leading to newer drugs, improving prognosis and quality of life in people living with this disease. For World MS day, the message should be for early diagnosis by a qualified neurologist, early commencement of individualised treatment, to escalate treatment if indicated, and to ‘ThinkHand’ in the patient who has been suffering from MS with an inability to walk,” says Dr Fourie.