The condition

MS is a chronic, often disabling disease that attacks the central nervous system, made up of the brain, spinal cord and optic nerve.

The disease attacks and destroys myelin – the protective fatty insulation around the nerve fibres of the brain and spinal cord – interrupting signals between the brain and the body.

The damage caused by these attacks is where the disease gets its name from, ‘multiple sclerosis’ literally meaning ‘many scars’. The damage is lasting and stays with you forever.

Symptoms may be mild, such as numbness in the limbs, or severe, such as poor balance, painful spells, paralysis or loss of vision. The progress, severity and specific symptoms of MS are unpredictable and vary from person to person and from time to time in the same individual, which makes it hard to diagnose and treat.

Each individual’s experience of MS is unique, with a different combination of symptoms and severity. But everyone with the disease lives with the uncertainty of whether it will progress and whether they will lose the ability to do the things that matter most to them. As many as 80 per cent of people with MS may develop a progressive form of the disease during their lifetime. A diagnosis of progressive MS takes the challenge of living with MS to a new level because, unlike relapsing-remitting MS, there are no effective treatments for progressive MS.

What is progressive MS?

This is one of the major questions we are seeking to answer. It is different from relapsing-remitting MS, the most common type of MS. Up to 65 per cent people with relapsing-remitting MS will eventually develop secondary progressive MS, while others (up to 15 per cent) are diagnosed with progressive MS from the outset (primary progressive MS). Both primary and secondary progressive MS involve a sustained build-up of symptoms with an insidious increase in disability.

Primary-progressive MS

Characterized by steadily worsening neurologic function from the beginning. The rate of progression may vary over time — with occasional plateaus and temporary, minor improvements — but, for 90% of people with primary progressive MS, there are few distinct relapses (also called attacks or exacerbations) or remissions.

Secondary-progressive MS

Follows an initial period of relapsing-remitting MS (the most common form of MS in people who are newly-diagnosed). In secondary progressive MS, the disease begins to worsen more steadily, with or without occasional attacks, slight remissions, or plateaus.

 

Every day people with progressive MS lose some of the ability to move, think, and connect with those they love and the greater world. While there are ten approved disease-modifying treatments for relapsing forms of MS, there are no approved disease-modifying or effective symptomatic treatments for progressive MS. This situation is unacceptable but the barriers are complex.

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