Health care should be a right, not a privilege. The COVID-19 pandemic has exposed the enduring inequities in our health care system, but for many people with multiple sclerosis (MS), these disparities—lack of access to health care, delayed diagnosis, inappropriate treatment—existed long before the pandemic.
Living with a chronic, unpredictable, often frightening disease such as MS is hard enough without also having to deal with obstacles such as not living near specialists, not getting the right medication, or not being taken seriously by physicians who don’t recognize that people other than young White women also develop MS. Our feature article explores some of these challenges and ways to address them.
As anyone with MS knows, self-care is an integral part of managing the condition, and that includes maintaining a healthy weight and exercising. Studies have shown that obesity increases the risk of developing MS and can exacerbate symptoms. In our nutrition article, you’ll find strategies for keeping the weight off. In our exercise column, you’ll learn about something called neuro-snacking as well as how to get fit while you sit.
We also profile two people who discovered the benefits of publicly disclosing their diagnoses. For MS activist Ann Romney, wife of former presidential candidate Mitt Romney, it inspired her to establish the Ann Romney Center for Neurologic Diseases in Boston and enriched her life. For Vincent Spoto, the support and compassion he received motivated him to write a book and helped him cope.
Honest and open communication is also integral to healthy relationships. Many people with MS are diagnosed just when they’re establishing serious relationships or starting families, which can make those decisions more fraught. Read how couples deal with MS while maintaining intimate and vibrant relationships.
MS sometimes can feel like the mythological Hydra, the monster with many heads. When one of the creature’s heads was cut off, two grew back in its place. With MS, you may successfully come through an exacerbation or treat one troublesome symptom only to have different ones develop. Or new financial or administrative barriers may arise just after you’ve managed to navigate one corridor of the health care bureaucracy. In every case, clear communication, accurate information, and support systems are your best allies. We hope you’ll consider the accurate and practical information in this issue your armor in fighting these battles.
Barbara S. Giesser, MD, FAAN, FANA
Issue Editor
