Multiple Sclerosis: The disease that hides in plain sight

On May 30, World MS Day, we look at this disease of the nervous system, in which symptoms can be difficult to diagnose and are often not obvious to others. As we work towards new treatment options, we must also understand what multiple sclerosis patients are up against.

“I have probably had this incurable disease for 15 years at least” – that’s how actress Selma Blair reacted when what she thought was a pinched nerve was finally diagnosed as multiple sclerosis (MS).

Life is hard enough for MS patients without the uncertainty that often surrounds the disease. Even after diagnosis, their illness is sometimes questioned, because many symptoms of MS are invisible to the casual observer. World MS Day - appropriately themed My Invisible MS - is an important occasion to raise awareness of this disease that hides in plain sight.

MS is a disabling disease that occurs when the body’s immune system mistakenly attacks the myelin sheaths of healthy nerve cells of the brain and spinal cord. It is much more likely to affect women than men[1] and has literally dozens of symptoms. All of these can potentially be due to other causes. That’s why MS often takes years to diagnose, as in Selma Blair’s case.

Invisible Symptoms – Uncertainty and Stress

For some, the uncertainty and stress of Multiple Sclerosis starts with slurred speech or blurred vision. For others, the first signs of MS include problems of balance or a general lack of coordination.

Unlike slurred speech and impaired motor function, by far most signs of MS go unnoticed by anyone but the patient and those closest to the patient. These are the invisible symptoms of MS.

As a practicing physician in the past, I have experienced the distress of MS patients and their families. I have been equally frustrated when patients’ symptoms progress, adding increasing limitations to their normal daily life. I would wish that a timely and conclusive diagnosis were always possible. Fortunately, we have made tons of progress since those times.

On a personal note, in 1997, while chairing an important business meeting, I started to notice blurred vision in my left eye. To make a long story short, I was diagnosed with optic neuritis and screened for MS, the leading cause of optic neuritis in a young female. The final diagnosis was low risk clinically isolated syndrome (CIS), which can develop into MS. I was very fortunate and the symptoms reversed in few weeks. But I vividly remember the fear and emotional stress until the MRI confirmed no abnormalities in my brain. Highly effective treatment options for MS were very limited in 1997.

MS Inside Out

It’s important to go beyond statistics and put a human face on Multiple Sclerosis. We need to understand exactly what it is our patients are up against to better support them.

This has motivated us to deepen our involvement in the lives of MS patients in a variety of ways. One example of our commitment is a documentary, “Seeing MS from the Inside Out.” This offers a unique perspective on the experiences of those suffering from the disease. As one of the patients featured in the video remarks: “The funny thing about MS is that nobody can see it.”

MS On My Mind

Besides the documentary, our U.S. affiliate (EMD Serono), has embarked on an initiative called “MS On My Mind” (#MSOMM). The creative force behind it is artist Lydia Emily Archibald, an MS patient also featured in our documentary.

MSOMM encourages patients like Lydia Emily to share day-to-day experiences of life with MS in real time. The initiative raises awareness of the disease’s emotional toll on patients and their caregivers while allowing us to identify important areas of need that we will address together with the MS community.

Progress Towards Better Solutions

A lot of brilliant and curious minds are working towards a clearer understanding of MS and potentially finding treatments using the body’s own immune system, for example. There remains huge potential for further improvements, but progress is one piece that is visible.

In the meantime, MS patients should know they are not alone. For every combined use of #MSInsideOut and #MyInvisibleMS across social media, we will donate 1 Euro[i] to the Multiple Sclerosis International Federation’s Informed Decision Making Program. We will also continue to keep MS on our minds as we work to expose and address this disease hiding in plain sight.

For every combined use of #MSInsideOut and #MyInvisibleMS across social media, we will donate 1 Euro to the Multiple Sclerosis International Federation’s Informed Decision Making Program.

[1] https://www.nationalmssociety.org/What-is-MS

[i] (up to 50k Euro, until June 8)