At Sanofi Genzyme we are focused on deeply understanding the experiences, challenges, and triumphs of those affected by multiple sclerosis (MS). And we believe that when we know more, we can do more. That’s the spirit behind our new global initiative, vs.MS, aimed at helping to address the physical and emotional burden of MS.
As a first step in our journey to launching vs.MS, we went straight to the source – the MS Community. We felt that gathering the unfiltered experiences of people affected by the disease would help us better understand the daily challenges of MS, and allow us to develop a program that addressed those challenges in a meaningful way. So in the summer of 2015, we surveyed more than 1,000 people living with relapsing MS (RMS) and more than 500 RMS care partners across seven countries. To take it one step further, we also convened a Steering Committee of leading neurologists, people living with MS and MS advocacy members from around the world to help inform the survey and the program overall.
When the survey results came in, we were not surprised to learn that the MS Community is struggling.
Emotional Burden: Nearly half of respondents living with RMS feel limited by their depression or anxiety Cognitive Symptoms: More than 1/2 of respondents living with RMS said they often have difficulties concentrating and remembering things Physical Symptoms: More than 1/3 of respondents feel urinary problems associated with their RMS are a factor in the decisions they make when planning to leave the house Relationships & Intimacy:Nearly 1/2 of RMS care partner respondents in a relationship with someone living with RMS report that the disease has impacted their sex life Care Partner Burden: More than half of care partner respondents do not discuss their fear of RMS progressing to avoid upsetting the person they care for.
The survey results helped crystalize what we already suspected - the impact of the disease goes well beyond the commonly discussed mobility issues. Living with MS is about more than relapses and what you see on a brain scan. It is an unpredictable disease that can be disabling both physically and emotionally. And now is the time to do something about it.
Through vs.MS, we hope to broaden the definition of disability so that it encompasses any limitation on daily life. Because, why should the MS Community settle? By expanding our understanding of disability, we will be more empowered to make the informed decisions that will help us better address the impact of the disease, and potentially delay future disease progression.
Beginning this World MS Day, I invite you to visit www.vs-MS.com for educational tools and resources that empower the MS community to address the challenges uncovered in the vs.MS survey. On the site, you can also declare yourself vs.MS by adding your name to the vs.MS ThunderclapTM (a simultaneous mass posting via social media) and sharing the campaign hashtag, #vsMS in social media to help elevate the movement. For every vs.MS declaration, Sanofi Genzyme will make a donation to the MS International Federation.
Together, we can strengthen the voice of the MS Community, highlight the true burden of this disease and reimagine our expectations of life with MS. Together, we can be vs.MS.
Story by Carole Huntsman, above, Global Multiple Sclerosis Lead, Sanofi Genzyme