This World MS Day, I am joining several thousand delegates at the 2019 CMSC (Consortium of Multiple Sclerosis Centres) conference in Seattle, Washington. We have been presented with new data on the available disease modifying treatments (22 and counting!), new developments on stem cell research and links to the microbiome, as well as a wealth of exciting research…but scarce mention of the elusive ‘cure’ for this complicated disease.
Imagine being diagnosed with an unpredictable, chronic, and progressively debilitating neurological disease that may take away your ability to walk, to see, to touch, to think clearly. Then imagine being told that despite decades of research and investment, there is still no cure for the disease, largely because the pathophysiology remains poorly understood.
Current perceptions of MS focus on the more obvious consequences of the more severe forms of the disease: the worsening of a patient’s mobility, the need for a cane or walker, or even worse. Yet, the reality for many patients is something quite different. Many people with MS have little or no apparent deficits at all on first glance, and coworkers, friends, and even some family remain unaware that they have been diagnosed with the disease. But that does not necessarily mean the disease has spared them significant symptoms. 'Invisible' symptoms like fatigue, bowel and bladder complications and cognitive decline are often the most common and distressing for people with MS.
On World MS Day, I am spending a lot of time with healthcare professionals, patient advocates and people with MS talking and learning about the 'invisibility' of this disease. I ask you to also take a moment to consider the reality of MS. Let us realise that the MS patient with a walking stick struggling to navigate the London Underground, as well as the MS patient who struggles to decipher the Tube map, both bravely face the burden of this disease every day.
“My Invisible MS” (#MyInvisibleMS), the 2019 World MS Day campaign is geared toward raising awareness of the invisible symptoms of MS, and their hidden impact on the quality of life of MS patients, their family members, and caregivers.