On the shoulders of giants

My multiple sclerosis diagnosis came as a total shock. Total shock as in going to the emergency room for a follow-up to a nosebleed and leaving four hours later with Bell's Palsy, a CT scan, contrast and no-contrast MRIs, and a preliminary diagnosis of MS. No kidding, it was that fast. I have two photos in my phone as an odd sort of commemoration. They are of the ER exam room just as I saw it shortly after the doctor left the room. My life changed a few minutes before 12:51pm. At least that's what the timestamp on the photo shows.

After hearing the matter-of-fact medical opinion, I sat on the examining table, smartphone in hand, furiously using Google. I wanted to learn more about the two-ton weight that just swung into my gut that left me utterly lost. I could not understand how I could have this chronic illness and display none of the stereotypical symptoms.

When the possibility of multiple sclerosis came into the picture, I did what most people do. I started looking for every piece of information I could find. The Internet was quickly becoming my very best friend. At any given moment, there was a browser page open with multiple sclerosis somewhere in the title. Exactly what causes MS? How do genetics come into play, if at all? Did I catch a virus? Why wasn't it caught before this? Was MS responsible for previous health issues? How long have I had it? What is the best avenue of treatment? Was no treatment an option as well? Am I going to die? Every day searching for answers. The Answer.

It was only after doing in-depth research that I was able to pinpoint my own set of issues as being symptomatic of MS. So much information was available to me at any time of day. Nearly every question had multiple answers and perspectives, and much of it was purely anecdotal. That was helpful when it came to some types of questions, but when it came to deciding my course of treatment I turned to research studies. There was something about the science and statistics that was soothing. While I did not have “The Answer,” I was able to find the information I needed to decide how I was going to face this lifelong challenge. MS became less of a scary fog of unknowingness. Research stripped away the mystery and in its wake left the powerful gift of knowledge. More than an intellectual approach, research would fast become a way for me to open my heart and give back to the MS community.

When asked if I would participate in two disease-modifying therapy studies, I was over the moon excited. When I considered how much of the knowledge we have about MS was gained from people with it, I knew I needed to contribute. Every tool available to me in my fight against this illness was based on the willingness of people before me to join a research study. A few extra vials of blood and 10 minutes of questioning was a small price to pay for helping someone else with MS. Just as I have stood on the shoulders of people before me, I want to provide strong support for those who follow.

Multiple sclerosis research has given me a treatment that enhances my life and a solid hope for a cure. Now that my treatment studies are completed, I am now giving back by connecting with the Accelerated Cure Project (ACP), a non-profit organization (and MS Society partner) that works to accelerate (hence the name) MS research efforts. ACP houses a unique repository of valuable data and biosamples to which researchers around the world have access. ACP also sponsors patient-driven research through iConquerMS™.

We know what we know about MS because others heeded the call to contribute to the MS body of knowledge. If you have benefitted from research, consider giving back by participating in return.
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Anita Williams

Anita lives in Colorado and is a first-time gardener who has discovered a new passion.