How I Use My Voice for Better Care

As I journey past the 30-­year mark of my life with multiple sclerosis, I am profoundly grateful for the research advances that have taken place since my diagnosis. They allow people in the MS community to hold on to hope while living with an unpredictable and incurable disease.

In the dark ages of my diagnosis I felt scared and alone. With no FDA-approved medications and the internet in its infancy, I didn’t know where to turn. My world went from living color to black and white.

From the angst and loneliness I felt, along with the absence of a treatment to control my disease, I became angry and frustrated. How could I possibly be proactive about my health when the medical community could only recommend I go home, rest, and call if I had a flare-up? My future looked bleak.

I was desperate to stay as healthy as possible, particularly after giving birth to my beautiful son. I turned to my nurse practitioner for guidance on how I could be proactive to make a difference, supporting faster and better research. I was blessed to be at a MS comprehensive care center whose founder was my nurse practitioner, the incomparable June Halper (CEO of the Consortium of Multiple Sclerosis Centers, CMSC). June was excited about a new registry being created specifically for MS patients: NARCOMS. By simply answering questions about my MS life, I’d be able to do my part to change the research landscape for the MS community.

Over the past 20 years NARCOMS (North American Research Committee on Multiple Sclerosis) has built an active international registry of more than 38,000 individuals with MS who report twice annually on their lives with MS by completing a simple survey. The registry’s mission is to facilitate multi­center research to lead to more effective treatments for MS.

I’ve been a participant in NARCOMS since its inception. Its confidential survey offers a way for me to use my voice, and that means everything. When I receive a NARCOMS email to remind me to fill out my survey, I am thankful and excited. It gives me a sense of pride to know I’m doing something that may lead to better medications, a better quality of life and, who knows, maybe even a cure.

Questions asked in the NARCOMS surveys range from how I’m feeling and what medications I’m taking to whether I’m using alternative medicines and what physical or emotional limitations I’ve been experiencing. If I don’t wish to answer a question, I don’t have to — only those I feel comfortable completing.

The surveys also offer a space for suggestions. I’ve never left that blank.

Unlike other surveys, where you participate but never hear final results, I enjoy reading NARCOMS research results in their free, informative quarterly publication NARCOMS Now that is mailed to me and available online.

The patient perspective is alive and well at NARCOMS. Their database helps all of us inform important policy issues and gives us a say on what MS research should be explored next. If you’re already participating in NARCOMS, a heartfelt thank you. If you’re not, please join us! It’s easy­peasy to register, and in this case the old saying is true: here the more is definitely the merrier. Visit narcoms.org or call 800-253-7884.
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Cathy

Cathy Chester

Cathy Chester is a Boston College graduate whose writing has appeared in numerous online publications, including The Huffington Post, Everyday Health, NARCOMS Now, Momentum Magazine, and The Mighty. Since being diagnosed with relapsing-remitting MS in 1986, she ensures that although she has MS, MS is not the sum total of who she is. Cathy has been interviewed by Woman’s Day Magazine, Everyday Health, Health.com, and many other MS and health-related websites. She currently lives in New Jersey with her husband, son and two adorable cats. She enjoys writing, reading, knitting, classic movies, music, theater, art, hiking, biking and paying it forward to others. Read more about her journey on her blog.