Multiple Sclerosis: The Mystery of Invisible Disabilities
bh IN BRIEF
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"Powerful new drugs … can pervent … disabilities"
Multiple Sclerosis (MS) is a special workplace challenge. Its disease pathway is unpredictable and the effects we cannot see often require the most sensitive accommodations. Although the exact cause of MS is still unknown, its mystery is starting to be unraveled. Thanks to research, new pharmaceuticals are making it possible to keep many patients “neurologically normal” and significantly reduce both the visible and invisible impact of MS on people’s lives at home and at work. Here are some further thoughts from our Dr. on Call, Melanie Ursell, M.D.:
Facts about MS
At any one time, about 100,000 Canadians have MS, and the incidence seems to be increasing. MS affects women more than men, but men can have more severe disease. MS usually strikes in the working years, between 20 and 40 years of age, although children as young as six months and adults over 70 years of age can also have MS. Ultimately, when caregiving responsibilities are considered, employers must recognize that MS can involve entire families.
The Forms of MS
MS can present in different forms, including Relapsing Remitting MS (RRMS) where patients present with episodic attacks of neurologic dysfunction lasting days to months; Secondary Progressive MS (SPMS) which is a transition from RRMS to a progressive stage of the disease; and Primary Progressive MS (PPMS) which involves no relapses but slowly worsens from the outset. Because RRMS is the most common form of MS, representing about 80% of newly diagnosed cases, most patients experience periods of remission and relapse. During remission, employees may function relatively well at work but when a relapse occurs, need accommodation and support. They may be absent until their condition improves again. Employees with MS require flexible working conditions and benefits that can be adapted to their particular needs at any given time.
The Invisible Effects
Traditionally, MS has been associated with visible physical disabilities, symbolized by canes, wheel chairs and walkers. Today, that is less true as powerful new drugs, used early in the disease course, can prevent such disabilities by reducing relapses and, hence, damage to the CNS. What remains are the invisible effects, such as sensitivity to heat and extreme fatigue, that still require workplace accommodations but may be more difficult to understand and accept.
What we know about MS
Two factors seem necessary to cause MS: a genetic predisposition and one or more environmental triggers that may include a virus, smoking, diet or lack of sunshine. When both factors are in play, their interaction sets off an autoimmune attack on the central nervous system (CNS) followed by ongoing immune system activity that results in chronic disease.
Specifically, the attack, at least initially, appears to be directed against myelin which is made of fatty tissue (lipids) and wraps around nerve cells to allow them to conduct electrical impulses quickly and efficiently so that we can see, hear, feel, walk and think normally. An analogy is the plastic coating around electrical wires. When the insulating myelin is stripped away, electrical impulses “leak” and either slow down or stop altogether, causing various symptoms, including invisible symptoms such as blurred vision, pain, weakness, numbness or tingling pins and needles, muscle spasms (especially in the legs), dizziness, urinary difficulties and sensitivity to heat which can increase other symptoms. Such symptoms can be eased by workplace accommodations, such as cool temperatures, short breaks from a screen or brief periods between tasks, and time for short naps or bathroom access.
What is more, because it takes a lot more energy to propagate electrical impulses through a nerve cell that has lost its myelin, people with MS require more energy for brain and spinal cord functions. They experience profound fatigue, both mental and physical, which is the worst invisible symptom of MS, and the one that interferes most with work.
Optimism for the future
There is cause for optimism. Greater understanding, powerful new drugs, other therapies, and relatively simple workplace accommodations are making a difference. They are overcoming both visible and invisible disabilities, helping employees reach their potential and become their employer’s greatest asset. The mystery is being solved. bh